Keira Curtis: Recovery and Degree Success

Keira was one of the early members of MEDALS. Keira had been at the University at Norwich for just six months when she was first diagnosed with ME. She eventually had to come home from her course in the Easter of 1993. Keira won a Social Security Tribunal to gain Income Support in 1993, and during her studies, she has received Severe Disablement Allowance. She spent 2½ years away from University. She took some Italian evening classes to keep her brain going; read books and watched videos.

In 1995, she transferred from the University of East Anglia to the University of York, which has a degree in Biochemistry with a modular structure so, with the university's support, she was able to work at a reduced pace. As her health improved, she was able to increase the workload, and she finally graduated in the summer of 2000 with a First Class Honours Degree in Biochemistry. From October 2000, Keira will be studying full time at the University of Cambridge for a Ph.D. In Cambridge, she will receive a full grant as a postgraduate student. It has taken a long time, and she still suffers from bouts of tiredness, but she is mostly recovered and intends to hold down full-time studies. We wish her every success for the future.

M.E., Computers.and using the Internet.

It was on a dull November day in 1998 that I became <carolyn@c-r-b.freeserve.co.uk>. I had been diagnosed with M.E. in 1996 after illness had forced me to give up work during that year. Over the next 18 months out of the window went my marriage, my social life and, what felt like the last straw, my car, which I had no hope of continuing to run now I was on benefits.In all this there was just one thing I had managed to keep as normal and this was my regular fortnightly visit to an aunt, uncle and cousin.

It was on one of these visits close to Christmas, that I was welcomed into their home to find the 'surprise present' all carefully laid out on the dining table. At first sight of the computer tower, monitor, keyboard, mouse and printer, I was both completely panic stricken and yet excited at the same time. "However would I learn to use it," was the first thought running through my head. ( I knew I wasn't well enough to go and get any lessons). Then again, interest and excitement stirred in me. Here was the means to discover the internet; e.mail; the world wide web. I knew that if I could learn to use this computer, no matter how long it took my foggy brain to master, then a whole new world of communication and information would open up to me.

I can't tell you the thrill during that first week when I managed to 'send' my first e.mail to my cousin to say "thank you" for providing me with a computer. He wrote straight back to say "well done - your email has arrived - I knew you could do it!"

Soon I found the UK M.E. e.mail group on-line and started corresponding with other M.E.'s all over the country. Then I found sites further afield in America and discovered so much information. By then I was receiving into my 'mailbox' an excellent little production (!) 'The Pathways', regularly too. Next, I found 'wings' - a live chat group for M.E.'s all over the world to join in and found, because of the time differences around the world, there is nearly always someone 'on line' at any time of the day or night to talk with.

Having become more used to the computer, I took the plunge and left a 'message' on one of the message boards especially for people with M.E. - just saying a little about myself and how I am managing my M.E. day to day; listing my interests and hobbies in the hopes that maybe I could be of some support/use to others.

As a result, others have made contact with me. Often they are people in the early stages of M.E.; some struggling to get a proper diagnosis; feeling isolated and just looking for some support/encouragement with others who understand without needing any explanation. I know have 'gained' much more than I can ever 'give' from the privilege of meeting others in this way - in cyberspace.

Recently, I've felt well enough to re-start an old hobby 'gardening'; in a whole new different way of course. I now potter around in pots ('scuse the pun) and containers and, I'm hoping in the near future to add veggie growing to the plants I enjoy growing so much. So once again I decided to put a short message on one of the UK E-pals lists for people in my own age group this time - 50 to 59 years, and mentioned my keen interest in 'all things gardening'. This time I had a great response from other enthusiastic amateurs. This is not a site for M.E's; it is purely a site for like minded people to find penpals (e.pals) but, I always tell people who contact me and those where I make the first contact, that I have M.E. so that they understand I am looking for "an e-pal friendship only", and that I cannot actually physically ever 'meet up with them'. So far, no-one has stopped writing once they knew and, most ask to learn more about the illness so that they can understand.

Most of us follow Gardeners World on television and then follow up, using our computers for a questions and answers session 'live' on the web for up to an hour or so after the programme has finished with one of the Gardeners World experts on line too, to answer questions. Its all very entertaining and such good fun.

The computer has more serious uses too these days. It provided instant information when recently I was asked to make 'pewbows' to be fixed to the pew ends for a family wedding and I hadn't a clue how to go about it, nor, the energy to go searching for library books on the subject. I looked up pewbows on the web and, there I found step-by-step instructions, complete with pictures of the finished article. I printed out the information and slowly made the 20 bows needed. The whole thing was a great success and made so much easier, because I have the computer.

Having the computer also enables me to help/hinder a certain person known well to you, by proofreading 'The Pathways' with him. In fact, it is in no small part due to Mike's help/encouragement/ bullying(!), that I have slowly and steadily gained confidence with my computer. Each time I say 'I can't do something' Mike responds with 'yes you can - try it'! So, I try it and find out - he's right!!

So; what are the gains:- Many new friends reached by e.mail, with and without M.E. The computer keyboard is light to use and so normal 'snail mail' letters are written, printed out and posted off in the usual way. An excellent tool for information. I feel of use to others. I am in touch with the outside world and, another bonus, my concentration levels are getting better than they were.

Any downsides:- A computer is an expensive item but mine is very 'second hand' and rather cobbled together and does the job fine for a beginner at a much cheaper price.The good news is that the price of a new computer is rapidly coming down right now.

You have to bear in mind that each time you go 'on line' you are using your 'phone. 'Phone bills can come as a 'nasty surprise' if you aren't selective about when to be on line. I am with British Telecom., and on Incapacity Benefit and at present I find evenings and weekends to be the cheapest time on line, using 'BT Together' package of discounts and with my computer listed in 'Friends and Family' as my very "best friend". (Don't do what I did and mention that to the human who was originally your "best friend" - they can be very offended!).
And in the future for me, my M.E. and the Internet:- most likely ordering my grocery shopping on line and, having it delivered to my door. It's a nice feeling to know that I can use that service and remain independent in those times when fatigue is overwhelming and the cold weather is too. For me the computer has proved to be a real 'lifeline' after M.E. walked in with all its limitations. I lost my own little world and gained the world wide web instead. Now I certainly wouldn't be without it.
Presidents Lecture (which you may have missed)

Dr. Swinbourne Chronic Fatigue Syndrome, The Middle of the road view.

“There is no excuse for any doctor NOT to know about CFS/ME. This year, in the Prescribers Journal (Volume 40, No.2 pages 99-106) there is a feature on Chronic Fatigue Syndrome by Prof.Anthony J. Pinching, Professor of Immunology, St. Batholomews Hospital London. Every doctor in the country will has received an copy of this. I’m leaving a copy for the group.” ( Contact me if you wish to see it. Mike) .

We would like to publish it in the Pathways, but it is a technical publication and is also copyright. It is in no way a substitute for the AfME ‘Information for Doctors Sheet’, but middle of the road, and an independent source of information which some doctors may prefer. A Short precis of the main points raised follows.

What Is CFS/ME.? CFS/ME is a debilitating illness that is characterized by at least six months of fatigue, together with impaired concentration or memory, and variable physical signs and symptoms. In many patients the condition begins suddenly, often following a flu-like illness or an episode of physical or psychologic trauma (i.e., surgery, a traumatic accident or the death of a loved one). In other cases, CFS/ME develops gradually.

The fatigue must be be severe enough to cause a greater than 50 percent reduction in usual activities. The exact cause of CFS/ME remains a mystery. So far, the most promising theory describes CFS/ME as a multi-system disorder that disturbs the complex relationship between the hypothalamus (apart of the brain that regulates hormones and vital functions), the pituitary and adrenal glands. This theory is supported by recent research that links some people with CFS/ME to a form of neurally mediated hypotension (abnormally low blood pressure caused by a brain/nerve problem).

Worldwide, cases of CFS/ME have been reported. In the U.K the support groups estimate that CFS/ME currently affects 1½ people in every 1,000. Women are affected three times more than men. Although the illness is most common in people 25 to 45 years old, CFS/ME can attack people of all age groups, including children. In general, most cases of CFS/ME are sporadic, affecting isolated individuals; but at least 30 outbreaks of CFS/ME have also been occurred during which many people developed the illness at the same time.

What are the Symptoms? The most prominent symptom is persistent, unexplained, fatigue, which is not relieved by rest. It must be severe enough to decrease the patients activity level at home, work or school. Besides fatigue, the following symptoms show:
1). Impaired concentration or short-term memory, severe enough to affect routine activities at home, work. school or social functions.
2). Enlarged lymph nodes (swollen glands) in the neck or underarm area.
3) Muscle pain. .
4) Pain in several joints, with no redness or swelling. .
5) Headaches & ‘Brain Fog’.
6) Sleep Disturbances. On waking, the patient doesn't feel rested. .
7) An extreme reaction to exertion or stress hours or days after the event
Not part of the definition but associated, 60 percent to 80 percent of patients with CFS/ME have symptoms of some type of mental health problem, especially depression. Others have symptoms of severe allergies or sensitivities and Irritable bowel syndrome.
What does a doctor look for? A doctor will look for a history of persistent, severe fatigue, together with the CFS/ME symptoms listed above. He will ask about symptoms of other illnesses that can be confused with chronic fatigue syndrome, including: hypothyroidism; adrenal insufficiency; cardiac disorders; sleep apnea or narcolepsy; side effects of medications; cancer; hepatitis B or C; certain psychiatric illnesses, especially including major depression, bipolar affective disorder, schizophrenia or delusional disorders; dementia; the eating disorders, anorexia nervosa or bulimia; drug abuse, including alcohol abuse; and severe obesity.
How is a CFS/ME Diagnosis Reached ? Currently, there is no laboratory test or procedure to confirm the diagnosis of CFS/ME, so doctors must diagnose CFS/ME by exclusion. As part of this process of this process exclusion, a doctor will perform a physical examination and mental health assesment. He will also order some basic screening laboratory tests, including: urinalysis; complete blood count, with differential; erythrocyte sedimentation rate (ESR)); and urea & electrolytes, and tests to measure levels of glucose (blood sugar), protein, albumin, globulin, calcium, phosphorus, and other blood chemicals. In addition, your doctor will order blood tests to measure liver enzymes (to evaluate liver function and/or liver damage), as well as thyroid tests.

Expected Duration . About 25% will recover within a year, 50% will have continuous relapsing & remitting illness. About 25% will never regain their former health. In many patients, symptoms are worst in the first one to two years. About 1% are severely affected needing continuous care. There is currently no known way to prevent CFS/ME.
What treatment options are there? There is no specific treatment. Management is the only option In general, doctors use a combination of the following:-
1) Lifestyle changes - Slow down and to avoid physical and psychologic stress. Learn to save their energy for essential activities and cut back on less important activities. .
2) Resuming activity gradually but steadily as the illness permits.
3) Treating existing mental health problems - Mental health problems can be treated with medication, and/or pacing. For patients with depression, tricyclic antidepressants (amitriptyline, dothiepin and trimipramine and others). Selective Serotonin Reuptake Inhibitors (SSRI) may help but are not effective unless depression is present. 4) Treating existing pain - Paracetamol, Co-proxamol nonsteroidal anti- inflammatory drugs are used to treat headaches, muscle pain and joint pain. Tricyclics sometimes help. Alternative therapies also give short term help.
5) Treat existing allergy & sensitivity. Exclusion, diet and drugs.
6) Experimental therapies - Thyroxine, hydrocortisone and other steroids.
 

Aromatherapy by Linda Gordon

Ancient textbooks describe the art of making ointments, medicated oils and preparations for the health of the body and the soul, and references in these texts to 'magical perfumes' to enhance charisma and restore happiness are commonplace. Modern aromatherapy as we know it today is a 20th century development. The term 'Aromatherapie' was first used 65 years ago by a French chemist called Gattefosse whose family owned a perfumery business. Working in the laboratory one day Gattefosse burned his hand badly and plunged it into a vat of lavender essential oil. The burn healed quickly without blistering, and this event set Gattefosse on a lifetime study of the therapeutic properties of plant oils. After Gattefosse, other pioneers such as Dr. Jean Valet, who used essential oils to treat wounded soldiers in the Second World War, developed his research. But it was the French biochemist Marguerite Maury who developed the method of diluting and applying essential oils by massage - the treatment which we know today as Aromatherapy.

What is Aromatherapy? Aromatherapy is the systematic use of essential oils in holistic treatments to improve physical and emotional well-being. Essential oils, extracted from plants, possess distinctive therapeutic properties which can be utilized to improve health and prevent disease. Both their physiological and psychological effects combine well to promote positive health. These natural plant oils are applied in a variety of ways, including massage, baths and inhalations. They are readily absorbed through the skin and have gentle physiological effects. Aromatherapy is an especially effective treatment for stress-related problems and a variety of chronic conditions.

Essential Oils. An essential oil is an aromatic, volatile substance extracted from a single botanical source by distillation or expression.. Essential oils have been utilized in fragrances, flavours and medicines for thousands of years. There are some 400 essential oils extracted from plants all over the world.

Aromatherapy in the U.K. is the fastest growing complementary therapy in the U.K. The first aromatherapy training school in the U .K. began reaching in the 1960s and there are now over 90 training establishments recognized by the Aromatherapy Organizations Council. (AOC) Courses vary in content as well as in length. However, with the development and implementation of the AOC Core Curriculum, they now should embrace a common standard. Courses available reflect a medical, holistic healing and aesthetic bias in their presentation of the Core Curriculum, since aromatherapists may come from a variety of backgrounds. Aromatherapists may work from home, in their own clinic, in medical or complementary health centres, in health clubs or have a visiting practise. Many also work in hospitals or hospices, and increasingly through GP referral. Aromatherapy is also one of the most popular forms of complementary medicine with U.K. nurses, who use it in all areas of care.

What happens in a typical aromatherapy session? The aromatherapists will ask questions about your medical history, general health and lifestyle. This will help him or her decide which essential oils are most appropriate for you as an individual. The aromatherapist may wish to contact your GP, with your permission, to inform him or her that you are receiving aromatherapy treatment. After selecting and blending appropriate essential oils, the aromatherapist will usually apply the oils in combination with massage. A session normally lasts for 60 to 90 minutes, and costs between £25 and £40.

How to find a qualified aromatherapist A qualified aromatherapist should:
I.) Have trained to the standards defined in the AOC Core Curriculum.
2). Be a member of a professional association.
3). Be fully insured to practise.

Is there any evidence that is work for M.E.? A survey amongst members of Action for M.E. showed that 62% of M.E. sufferers benefited from the use of alternative therapies. Of those around 90% found aromatherapy massages the most helpful therapy in alleviating their symptoms. Aromatherapy works very well with M.E. sufferers on a therapist to patient basis, taking into account the differing symptoms which each individual sufferer will present.

Research has shown that when they are applied to the skin or inhaled, essential oils are absorbed into the bloodstream and established in the body, similar to other substances. Many essential oils possess significant anti microbial properties, in both liquid and vapour form. Clinical trials have shown that tea tree oil is highly effective in treating thrush. Another study has shown that aromatherapy massage with lavender oil was significantly more effective than both plain oil massage and a control group, in reducing heart rate, respiration, blood pressure and pain in patients in a hospital intensive care unit. There are many studies that demonstrate how essential oils can positively affect mood and the sense of well being.

Adverse Affects. Occasional allergic reactions have been reported from the use of some oils (e.g. lemongrass) which are far more concentrated than their original plant form. A therapist will look very carefully at the label and make sure the oil is properly diluted before use. Another concern is that some oils may be absorbed through the skin and then enter the general circulation. For this reason the International Federation of Aromatherapists have drawn up the following guidelines: .
Avoid altogether because of possible toxicity - calmus, cassia, fennel, horseradish, mugwort, mustard, pennyroyal, rue, sassafras, savin, tansy, wintergreen, wormwood, sage, aniseed, hyssop .
Avoid in pregnancy (may cause bleeding) - all the above plus basil, birch, clary sage, cypress, jasmine, juniper, maIjoram, myrrh, peppermint, rosemary and thyme
Unsuitable for hypertensives ( raised blood pressure) - hyssop, rosemary, sage and thyme. Fennel, hyssop and wormwood can also trigger epileptic attacks .
Avoid if you have sensitive skin (can cause an unpleasant irritant dermatitis) - basil, lemon, melissa, peppermint and thyme. These oils can also irritate when used in the bath. Also avoid bergamot, lemon, lime, orange and verbena in strong sunshine.
What appears to be safe and may be worth trying includes:
Bergamot, Camomile, . Cedarwood, Geranium, Lavender, Peppermint , Rosemary, and Ylang ylang.
For more information on the benefits of aromatherapy send an A5 SAE to: The Secretary, AOC 3 Latyrner Close Braybrooke Market Harborough Leicester LE 16 8LN Tel/fax: (01858) 43424. Linda can be contacted on Doncaster (01302) 852145.

Disability Living Allowance or, Moving the Goalposts.

Disability Living Allowance (DLA) is a non contributory state benefit. According to the rules, people with CFS/ME should qualify at sometime in their illness. Five years ago most of our members qualified simply by filling out a form. Sometimes a D.S.S. doctor visited the patient at home, and a decision was made to give an award. However, it has been increasingly obvious over the past two years that the D.S.S. have been systematically refusing DLA on renewal claims as well as new claims. This means that most applicants end up facing an independent tribunal. Most claims of our members claims are upheld eventually, by a tribunal, but the experience is usually daunting.

Now the problems seem to apply to almost all cases. It is reasonably certain that the D.S.S. are instructing their doctors (EMP Examining Medical Practitioners ) to put in unfavourable reports in CFS/ME cases. Personally, I believe that the government have a hidden agenda to withhold this benefit by erecting bureaucratic barriers, and hoping claimants will loose interest. Obviously, Tony Blair would be out of a job if he did this publicly !.

If someone goes to a tribunal they need an advocate. This is someone to put their case forward, acting like a solicitor in a court of law. A large proportion of our members use Brian Ashworh from the Orchard M.E. Centre. Brian is in a unique position to be able to understand the system. His experience tends to confirm my view. Here are parts of a letter he sent to the D.S.S.:-

Many of the doctors you employ do not accept CFS/ME as an illness and there is no evidence whatsoever that, when examining applicants, they apply the criteria you describe.... It was apparent to us (in one case) that the doctor did not understand the illness and made damaging statements....People hate not being believed and having their answers misapplied. We are not asking the EMP to accept the applicant's own statement. What we do expect is that they report what they actually see and hear, and what they can support by fact. Two recent reports opined that the walking ability was so good that they would
actually have reached Olympic targets. This is not a flippant remark - it is serious because it affects, radically, a person's life and recovery.

The time doctors spend on examination varies from 15 minutes to 1½ hours. We would expect a CFS/ME examination to take at least 45 minutes. There is also considerable evidence that doctors are ”bullying” applicants to sign the form.

We believe that the report should be completed in the applicant's presence or, if this is not possible, that the applicant should not be asked to sign until it has been completed and seen to be accurate. You will also know from complaints, about which we are aware, that there are certain doctors whose examinations cause concern. It seems to take a long time for action to be taken.

Here are extracts of the following reply. Most of the letter is a standard answer (canned message) by the D.S.S..

...It may be helpful to explain that Sema Group Medical Services provides a national medical advice and examination service to the BA under a contract specification awarded in September 1998.

We are not complacent and are aware of the criticisms made of some aspects of our work. However, I can reassure you that all doctors who carry out medical examinations in connection with claims to benefit complete mandatory training in analysing the effects of disability. Following their training they are approved by the Secretary of State and adhere to a series of professional and quality standards. To help us detect any problems we have recently introduced a stringent quality monitoring system that allows us to take appropriate action on an individual level, and provide valuable information to inform future training needs.

In response to the concerns you have raised regarding CFS/ME. I can confirm that this condition is recognised by the Department of Social Security and Medical Services as a condition which can be most disabling for some people who are affected by it. There are now generally accepted criteria for its definition, and Medical Services doctors are trained to apply these criteria. They are also trained in properly assessing the disabling effects of the condition on the individual claimant, taking into account that they may fluctuate; from day to day.

Medical Services doctors have access to, and are expected to follow, guidance contained in a report of the Expert Working group on Chronic Fatigue, chaired by the Chief Medical adviser to the DSS. Guidance is also contained in The Disability Handbook; the section dealing with Chronic Fatigue Syndrome was revised in 1996 with the help of groups having a particular interest in Chronic Fatigue, and appears unchanged in the second edition, published in l998.

The role of the examining doctor is to produce an independent, impartial report of their own opinion on a Claimant's need for care and mobility. This is based on their clinical assessment of the Claimant, that may include relevant physical examination, interview and observation, rather than being a restatement of the Claimant's opinions. In view of this there may often be areas in the report where the doctors opinion differs from that of the claimant.

Some of the complaints are related to the fact that the examining doctor formed an opinion contrary to that of the Claimant and or the Carer. It is important to explain that to formulate their opinions the doctor uses his/her clinical knowledge and judgement and his/her knowledge of the effects of disabling conditions on every day life. A doctor does not necessarily have to see a person perform a function in order to reach an opinion of the capability to perform that function. For example, an opinion on walking ability can be formed by assessing such things as muscle bulk, tone, power, back function, etc. Often the opinions the doctor forms are contrary to those of the Claimant and/or their Carer. However, the doctor must express his/her own opinions, otherwise there would be little point in asking for a doctor's report if he/she were just to reiterate the Claimant's and/or Carer's opinion irrespective of their own opinion.

Claimants often feel that the time they spend undergoing an examination for Disability Living Allowance (DLA) is too short. The examining doctor may spend quite some time discussing non-medical issues such as typical daily activities. This can be mistaken for chatter, whereas it is actually a vital part of the examination and the assessment. To the Claimant, recollecting the examination, it may seem that only a short time was spent on the medical condition itself. This is because the doctor is mainly concerned with the effects of the condition and not the condition itself.

The length of a particular examination depends upon the nature of the Claimant's disability. The examining doctors aim is to obtain the information needed to give advice to the independent Decision Maker who will make the decision on benefit entitlement. It may be apparent early in the examination that the Claimant is significantly disabled. In these circumstances, the doctor will not prolong the medical examination unnecessarily, and will try to cause a minimum of distress to the Claimant.

A examination report is split into 2 parts. The first Part is a record in the Claimant's own words, in the way which their disabilities affect them. The examining doctor should complete this at the time of the examination and either read it back to the Claimant or to allow the Claimant to read it for themselves. The Claimant should; then sign the first part of the report form. The remainder of the form contains the doctors own individual assessment of the Claimant's condition and is usually completed after the examination.....

Dr.Charles Shepherd sent us the following extract from an article by him is in ‘Perspectives’:-

A scathing report on Sema Group Medical Services - the company who now carry out medical assessments for the DSS Benefits Agency has been produced by a House of Commons Social Security Select Committee. Their con-conclusions will probably come as no surprise to people who have had their benefit claims refused as a result of a medical examination organized by this company.

Among the key conclusions contained in the Select Committee report are that Sema and its medical staff:
1) Lacked the necessary professionalism and were sometimes even rude to claimants,
2). Subject sick and disabled claimants to unacceptable delays.
3). Carry out painful and uncomfortable examinations which are frequently too short and not performed to the required standards.

A spokesman for the British Medical Association, who have also criticized the Sema Group and the Benefits Agency Medical Services in the past, was quoted as saying ....

“A vast number of doctors left when Sema took over over and were replaced by doctors of varying quality , some very good and some inexperienced. Sema bid too low for the contract and therefore has insufficient doctors earning insufficient money to do the work. They need to employ experienced doctors who don't come cheap."

Sema actually obtained the contract to carry out Benefit Agency medical examinations in 1998. They now employ 200 full-time doctors, as well as a larger number of GPs who carry out assessments on a part-time basis. MPs on the Select Committee have called for a radical overhaul in the way in which Sema carry out their activities in the future.
. If you feel that a benefit claim has been unjustly refused as a result of an inadequate medical examination carried out by a doctor employed by Sema; then do send in an official complaint to your local DSS office. Send a copy of your letter to your local MP as well because they are also monitoring the performance of Sema over the corning months. If you have a more serious complaint about the.way in which your medical examination was conducted, you can write to the company's Chief Medical Officer (Dr. Steve Ringer) at: Sema Group Medical Services, 29- 37 Brighton Road, Sutton, Surrey SM2 SAN. Please send us a copy of any response you receive.

UNHELPFUL DOCTORS

Besides your accounts of hospital consultants who take a very hostile or unhelpful approach to anyone who presents at their clinic with a possible diagnosis of CFS/ME it's also clear that many of these doctors don't have a clue when it comes to dealing with patients in a civil and professional manner. The General Medical Council recently issued all doctors in the UK with guidelines on professional conduct. The key points from this advice are summarized below:

Make the care of your patient your first concern.
. Treat every patient politely and considerately.
. Respect a patient's dignity and privacy.
. Listen to patients and respect their views.
. Give patients information in a way they can understand.
. Respect the rights of patients to be fully involved in decisions about their care.
. Keep your professional knowledge and skills up to date.
. Recognize the limits of your professional competence.
. Be honest and trustworthy.
. Make sure that personal beliefs do not prejudice a patient's care.
. Work with colleagues in ways that best serve your patients interests.

No reasonable doctor could disagree with the above. If you come across one who obviously has no respect .for this advice, then a formal complaint to his/her employer or the General Medical Council is a perfectly reasonable course of action to take.

So what action do you take if a doctor makes comments like this about a well known AfME Doncaster member on a DLA form?

He says he has had no exercise since 1992 when he retired. His weight is excessive and has not altered. In my opinion any physical limitation of his walking that might be present would be due to obesity and lack of fitness.

His history, and observed behavour, were not consistant or compatable. None of it corresponds to any case of CFS/ME etc. imaginary or real I’ve seen. To be frank I don’t believe it.!

Well, you’ll have to wait until the next Pathways to find out what happens and how it was dealt with..
Mike


What can go wrong with a DLA Application.

One of the biggest problems that I come across as chairman of the group is DLA refusals. Most end up being awarded after a tribunal, but the experience can be daunting. This is what happed to me.

27th October 1999: Renewal Claim. New regulations need a D.S.S. doctor's report.
23rd November 1999: Dr. S. supposed to visit. Didn’t.Told not to revisit.
16th November 1999: Old Award ends.
11th January 2000: Encounter with Dr. M. Arrogant. Told not to bother coming back.
4th February 2000: Visit by Dr. *!.
16th February 2000: D.L.A. Refused: Bryan from the Orchard M.E. Centre engaged.
3rd March 2000: Application for review.
6th June 2000: Review Refused.
13th June 2000: Decided to go to Tribunal. Appeal lodged.
1st July 2000: Tribunal Papers Received. Very contentious.

Dr. *! wrote: He says he has had no exercise since 1992 when he retired. His weight is excessive and has not altered. In my opinion any physical limitation of his walking that might be present would be due to obesity and lack of fitness. His history, and observed behaviour, were not consistent or compatible. None of it corresponds to any case of CFS/ME etc., imaginary or real I’ve seen. To be frank I don’t believe it.!
Bryan says:.. His "opinions" are offensive and should have been of no value in the assessment of the application.

Got to fight this one because of implications to other private and state benefits.

27th September 2000: Tribunal no.1. Letters from two ME. Specialists and G.P. disagreeing with Dr. *!’s report. DSS wrote Jobsworth waffle. Tribunal Decides:

1) Dr. *!. should not have seen Dr. M’s papers.
2) Both above reports were unacceptable because of biased views expressed.
3) Another independent medical examination, with a witness should take place.
4) Complain about Dr. *!. and Dr. M.
5) Resume proceedings when new evidence available.

10th October 2000: Dr. B. visits. Bryan Ashworth attends. Medical Examination in depth. Medical report favourable to neutral.
15th November 2000: Tribunal no.2. Different set of people. Grilling. Score is D.S.S. 2½, Mike 3. Mobility Awarded, one year backdated, one year farword. Personal Care refused. Talked myself out of it !!! Bryan feels decision not correct.
31st December 2000. Complaints acknowledged G.M.C., M.P., Sema and D.S.S.
9th January 2001 Relay from SEMA ...( preamble) ...(jobsworth waffle)...

I can advise that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is a condition which is recognized by the Department of Social Security Medical Services' clear acceptance of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as an entity is witnessed by the release of an update on the condition, issued to all doctors during the summer of 2000

. I can confirm that at the time of your assessment, Dr. *!. had completed the relevant training courses ncluding the training on CFS/ME and that since your assessment, Dr. *! has completed the Update of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis distance learning module.

In his response, Dr. *! has confirmed that it is his normal practice to enclose any medical evidence provided by customers in the file that is referred back to the Decision Maker for their consideration. This clearly was not the case on this occasion and I can assure you that Dr. *! has been reminded of the correct procedures to follow.

....Unfortunately, Dr. *!. has made comments that the history and observed behaviour were inconsistent and incompatible but has not added further justification to support his opinion. The paragraph suggesting that this does not correspond to any other case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and his expression of disbelief of the diagnosis are inappropriate.

However, Medical Services would expect Examining Medical Practitioners to highlight any inconsistencies to the Decision Maker. As of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Medical Services accept that the most appropriate course of action would have been to suggest to the Decision Maker that it would be helpful to obtain additional factual reports before reaching a decision.

Medical Service and myself are sorry that this did not happen.

It is clear that you have not received the standard of service that you have a right to expect and that Dr. *!. made some inappropriate comments on his report. Medical Services and myself would like to offer you our sincere apologies for this and the inconvenience that you have been caused. ALEXIS CLEVELAND CHlEFEXECUTIVE.
.
12th January 2000: Backmoney recieved.
21st January 2001 I write a letter:.
...it would appear that Dr. *! has been fully trained, qualified, and confident to do the job he was asked. But from my case it is quite clear that:

1) He did not have the necessary clinical experience,
2) Didn't pass on clinical evidence knowing he should,
3) Made adverse comments without any foundation.

Because he has caused me unnecessary anxiety and two tribunals, delay in payment of benefit and loss of the ability to carry on with ‘Motability’ car I am asking the following reparation:

1) A full apology written and signed by Dr. *!.
2) You writing to the Adjudication Officer concerned, highlighting the contents of your letter AND making it clear that Dr. *!'s report is not valid and to amend my records accordingly.

The moral of the story.
1) Some of the DSS doctors are still biased against M.E. This is unacceptable.
2) If you are applying for DLA get help from a professional organization right from the start.
3) If you are refused, fight it, don't take ‘no’ for an answer, use a professional advocate.
4) It costs public money. Tell your M.P. Complain. When the D.S.S. realize it is wasting money, they will be scrutinised bu the Public Accounts Committee.
5) A full set of papers after the first refusal, would have saved time, paperwork and expense. Mike.

The House of Lords & Complementary Medicines

More regulation of complementary and alternative medicine (CAM) and its practitioners is needed, according to the House of Lords Select Committee on Science and Technology published on November 28 2000.
They recommend :

a) Well-regulated and evidence-based CAM therapies should be provided on the National Health Service. Where CAM is provided on the NHS it should be through referral by a health care professional.

b) The Proprietary Association of Great Britain, (An organization representing manufacturers of conventional medicines) had pointed out that the public had great difficulty in distinguishing between licensed medicinal products and unlicensed herbal medicines. The Medicines Control Agency should find a way which would allow the public to identify licensed products and that it should enforce the rules against making medicinal claims for unlicensed products more strictly.

c) Conventional health care practitioners should become familiar with CAM therapies as part of their continuing professional development. Professional and regulatory bodies should develop guidelines on competence and training in CAM therapies for health professionals who wish to provide complementary therapies as part of their practice.

d) The report divides CAM into three groups:-

Group 1: There an individual diagnostic approach and well-developed self-regulation of practitioners. These have established research into their effectiveness, organized self-regulation of their practitioners, and are increasingly being provided on the NHS. It says that statutory regulation of practitioners of acupuncture and herbal medicine should be introduced quickly, & that such regulation may soon become appropriate for homeopathy.

. Acupuncture, Chiropractic, Herbal medicine, Homeopathy and Osteopathy.

Group 2: Covers therapies which do not purport to embrace diagnostic skills and which are not well regulated.

Alexander technique, Aromatherapy, Bach and other flower remedies, Hypnotherapy, Maharishi Ayurvedic medicine, Massage, Meditation, Reflexology, Shiatsu, Spiritual healing, Nutritional medicine and Yoga.

Group 3: is divided into two:

3a) covers other disciplines which are either long-established but indifferent to conventional scientific principles

Anthroposophical medicine, Ayurvedic medicine, Chinese herbal medicine, Eastern medicine, Naturopathy, and Traditional Chinese medicine.

3b) Which lack any credible evidence base

. Crystal therapy, Dowsing, lridology, Kinesiology, and Radionics.
A Strategy for dealing with ME/CFS.

Dr. Myhill is a private G.P., with a wide experience of ME/CFS. She has kindly forwarded us an update on her ME/CFS checklist leaflet for the ‘The Pathways’. Further in depth information is available through her compilation of information sheets which are available to anyone interested, Contact: Dr. S. Myhill, Upper Weston, Llangunllo, Knighton, Powys LD7 1SL. Telephone (01547) 550331 Fax (01547) 550339.

Important, Don't go on to the next stage until the earlier ones have been fully explored.

Stage 1. Make sure it's ME/CFS.

Is the diagnosis right? Has serious pathology been excluded? e.g, cancer, MS, autoimmune disorders etc.
Is the fatigue delayed? i.e, do you pay for any exertion 1, 4 days later, If you do, you have ME/CFS and must pace all activities carefully, If not, (i.e. you just feel tired that evening but are better by the next day) then you should do a graded activity programme.
Have a careful think about what caused your ME/CFS as this will give a guide to treatment, Think about the time building up to the start of the illness, what the trigger was, which illnesses run in the family?

ME/CFS is a diagnosis of exclusion. Tests to exclude serious disease may be helpful, but even if they are all normal, you could still have other serious disease. The opinion of a good physician should always be taken to make the diagnosis. Recent onset of symptoms which may be worsening would suggest serious underlying disease.

Stage 2. Observe six fundamental rules. This applies to all ME/CFS sufferers:

Rest, 80% rule, pacing, mental and physical. Get organised. Accept help. Arrange for deliveries to house. Delegate work. Prioritise. List the 10 most important things in your life, then ignore the last five. You can't do everything.
Sleep. Quality sleep is essential to life. Don't be afraid to use tablets to restore the normal day/night diurnal rhythm. Avoid caffeine after 4 p.m., it will interfere with sleep.
Supplements. It takes at least 6 months for body stores to replete. Supplements are for life.
Avoid infections whenever possible. At the first sign of a cough, cold or sore throat use vitamin A (not if pregnant), vitamin C, zinc, selenium and propolis.
Diet. You are what you eat, but everybody is different. Everything in moderation but use as wide a variety of quality foods as possible. Avoid sugar, "junk foods". Avoid any one thing in excess. Don't drink tea at meal, times, it blocks absorption of trace elements. Use mineral water to drink at least 2 pints daily. Eat salt, ideally SOLO sea salt (full of essential minerals). Eat foods as raw and unprocessed as possible. Organic foods where possible. Use beans (flageolets, chick peas etc. ) hot and cold in salads to increase variety and fibre. They can be bought in bulk and store well.
Do a chemical clean up, throw out all the smellies in your house, keep the house well ventilated, avoid sprays, polishes, aerosols, new paints, new carpets, gas cookers and heaters etc.

Stage 3. Tackle some, or all, of the underlying causes. Do the other things which support the body. They work, but goodness only knows why (B12, antidepressants, magnesium injections etc.). Do as many of these things at the same time as you can. By the time you have been ill, for several years, more than one thing will be wrong, you need to tackle them all at the same time to see improvement. The priority is to get well. Once you are better, these things can be knocked off one at a time to find out which is important. In order of importance:

Get magnesium levels checked. Red cell magnesium, treating magnesium deficiency.
Painkillers.
B12 injections should be tried at some stage. Don't waste money measuring B 12 levels, that is irrelevant, it is the response to injections which is important. Make sure you are on a multivitamin containing folic acid when you have injections.
Elimination diet. Grains (wheat barley, rye oat) are the commonest allergic cause of fatigue.
Hormonal disturbance. Adrenal gland insufficiency, hypothyroidism and natural hormone replacement.
Gut symptoms. Getting gut symptoms right is central to getting the ME/CFS right. Consider gut fermentation, helicobacter pylori, gut parasites ( e.g. symptoms following travel abroad), food intolerance, Iactose intolerance.
Care with female sex hormone. The Pill and HRT worsen ME/CFS in the long term and certainly predispose to getting ME/CFS, because they suppress the immune system and induce nutritional deficiencies.
Low dose antidepressants. Many ME/CFSs do well on tiny doses of tricyclic antidepressants such as amitriptyline 10mgs, dothiepin 10mgs, trimipramine 10mgs at night. In these doses I would not expect much effect on depression.
Chronic low grade undiagnosed infection, helicobacter pylori, pelvic infections, chronic prostatitis, skin and nail infections, chronic undiagnosed infections. Hyperventilation can cause fatigue, often driven by food intolerance and low magnesium levels. Helped by relaxation techniques.
Chemical poisoning. Exposure at work to organophosphates (farmers), dog and cat flea treatments, human head lice treatments, ‘Vapona’ fly blocks/sprays, woodworm treatments, contaminated water. Toxic causes of ME/CFS. Heavy metal poisoning. Carbon monoxide poisoning. Any silicone implants, siliconosis? Gulf War Syndrome. Chemical poisoning often leads on to MCS.
MCS (Multiple chemical sensitivity). Suspect if symptoms better out of doors, better in the summer, better away on holiday. Do chemical clean up. Eat organic where possible. Check with the QEESI questionaire.

Stage 4. If you are still struggling, despite having tried all the above (Have you really done it properly?) then it is likely your problems are caused by multiple allergy to foods, to chemicals or to moulds
:
Get mould allergy tested, either by skin tests or by going abroad to a warm dry climate ideally for one month, but two weeks may give you an idea. Make sure that place is chemically clean. Not easy.
Consider desensitisation such as neutralisation or my preferred technique enzyme potentiated desensitisation (EPD) for foods and possibly chemicals. EPD does not work so well for mould allergy,

Stage 5. Weird and wonderfuls. Don't know why or how they work, but do work for some people or are untested.

Healing. A local healer can be found from 01891 616080.Geopathic stress.
Heparin
Immunovir
Gammaglobulin injections.


Stage 6. Desperation stakes.

Consider a house move. For severe mould and/or chemical sensitivity the only answer may be to move to a hot dry climate.

Everybody gets better from ME/CFS in a different way, often a combination of the above.

Tackle your illness from every angle you ca. Always have a plan.

Always keep a light at the end of the tunnel. Keep talking with other sufferers, they will have ideas and inspiration.
 

Information for Doctors: Copy of AfME factsheet (1997) .

Dear Practitioner,

This Factsheet was designed to provide you with concise, easily understandable background information about the controversial illness commonly known as Myalgic Encephalomyelitis (ME), or Post Viral Fatigue Syndrome (Chronic Fatigue Syndrome or Chronic Fatigue and Immune Dysfunction Syndrome in the USA), to help you diagnose and manage the illness.
Why the Controversy?

The controversy over ME/CFS has arisen for a number of reasons;
- There is no single disease definition in common usage world-wide.
- There is no single diagnostic test available.
- The syndrome has been given a multitude of descriptions in the media and medical press.
- Many patients are self-diagnosed as a result of media coverage of the disease.
- It has been suggested by some psychiatrists that ME/CFS is just a form of depression.
Diagnosis

Diagnosis is based on careful history and examination. It is essential that other conditions are excluded. You may find it difficult to distinguish ME/CFS from other post-viral states. However, ME/CFS will exhibit the following features which should distinguish it from, in particular, the common variety of post-flu ' debility that usually lasts only a few weeks;
- Abnormal muscle fatigability: the patient may take days to recover following minor exercise, and the fatigue will be different from anything previously experienced.
- Encephalitic symptoms: especially poor concentration, short-term memory loss and disturbances
of sensation.
- Variability of symptoms from day to day or within one day.
- Symptoms present for six months or more.
- A tendency to become chronic over months or even years.

Typical ME/CFS symptoms:

- Onset due to viral infection in a previously fit and active person, typical age 20-40 (but cases aged 8-80 recognised).

- Physical and mental exhaustion out of all proportion 10 effort made.

- Symptoms suggestive of chronic infection - low grade fever, tender lymph glands, sore throat.

- Muscle symptoms: Exercise-induced muscle weakness, taking days to recover. Problems arise from sustained muscle use - after rest, muscle power may initially be quite normal. Commonest muscles affected are 'girdle muscles': glutei, trapezii, also quadriceps. Inability to stand for long is quite typical, as is difficulty holding up arms or carrying bags. The muscles feel sore and ache after minimal exercise (myalgia), and on palpation there are commonly acutely tender foci in thighs, upper arms and shoulders. Difficulty in reading for long, or in writing a letter, are also typical muscle fatigue symptoms. Muscle twitching is common. Patients who ignore the early warning signs of fatigue on exercise may collapse, feel sick and dizzy, and be ill for days afterwards.
- Encephalitic symptoms: Memory loss, poor concentration, clumsiness, nominal aphasia - all made worse by physical or mental work. A common complaint is 'my brain doesn't work any more'. Other neurological dysfunctions include hyperacusis, tinnitus, light sensitivity, altered taste, slurred speech, parenthesis.

- Autonomic disturbance: e.g. palpitations, sweating, sudden or grey pallor, poor temperature control, diarrhoea, bladder dysfunction, altered blood sugar control. These may result from some involvement of the hypothalamus.

- Sleep disturbance: vivid unpleasant dreams or hypersomnia.

- Depression: very common, and may be associated with physical exhaustion, or may appear with no obvious cause.

- Pain: in some patients; severe 'bursting' headache, abdominal pains, back, neck or facial pain, unlike pain experienced before (e.g. not the same as migraine), and changeable from day today. Joint pain without swelling is also common.

All symptoms are worse after exercise. Sometimes the autonomic changes are the first indicators of a relapse.
Onset:

In most patients, the onset of the illness can be traced to an infection, sometimes apparently trivial, frequently one typical of 'summer flu' with mild fever, sore throat, lymphadenopathy, mild gastrointestinal upset, and muscle pains. In a few, the illness has come on gradually, and infection at the outset is not remembered. Perhaps the most common precipitating infection in the UK is Coxsackie B, an enterovirus. However, ME/CFS can follow chickenpox, other viruses, or even from an immunisation. It seems that in a susceptible person, there is a failure to eliminate the virus, allowing it to invade deeper tissues e.g. muscle and CNS, whose cells' function is then disrupted. In the UK, just over half of patients with classical ME/CFS symptoms show evidence of persistent enterovirus infection. Many of the rest may have reactivated Epstein Barr infection.
Differential Diagnosis
Other conditions must be excluded: muscle diseases, toxoplasmosis, other neurological disease (e.g. MS), thyroid disease, diabetes, Coeliac disease, various autoimmune diseases, cancer, hepatitis B, chronic infections (e.g. TB, AIDS, Lyme disease), tropical infections (e.g. schistosomiasis), nutritional deficiencies etc. etc.
I investigations
investigations should be carried out to exclude other conditions. There is at present no one specific test for ME/CFS Routine blood tests rarely reveal any abnormalities. The most likely findings indicative of ME/CFS are:
- WBC - maybe a few abnormal lymphocytes, an abnormal ratio of T4:T8 Iymphocyles. or a persisting lymphopenia.
Raised IgM (indicating present or recent viral infection), particularly to Coxsackie virus if there is a local outbreak.

- Muscle enzymes may be abnormal. Routine investigations for Epstein Barr infection are often unhelpful, as over 90% of young adults have had this infection at some time, and therefore show evidence of raise IgG antibody levels.,
Other specific investigations (not routine):

- Muscle biopsy.
- Electromyogram.
- Nuclear Magnetic. Resonance (NMR) of muscle or CNS.
Physical Examination

This rarely reveals gross abnormality, however, on palpation of large muscles such as quadriceps, or trapezius, one will find foci of acute tenderness. Testing of muscle power may show weakness in different muscle groups, this becoming pronounced after exercising the muscle: e.g. asking the patient to walk up and down stairs (if able), or to squeeze a rubber ball for a few minutes. Muscle exhaustion is reached much earlier than in a normal subject, and the loss of power may last for many hours or even days.
Neurological examination: sensation is normal, but tests of balance (e.g. Romberg) are usually abnormal. The plantar response is often normal, tendon reflexes may be brisk, but abdominal reflexes are often weak or absent.

Complications of ME/CFS

These may give the presenting symptoms, thus confusing the clinical picture:
Myocarditis: the heart muscle may be affected, especially if the triggering virus is Coxsackie. Research in Glasgow is finding that some long term sufferers have myocardial and/or mitral valve damage, but these results are not yet published. This may be relevant for patients who complain of chest pain. breathlessness or palpitations on minimal exertion.

Depression: depression and personality changes in a previously stable person are common in ME/CFS, but also in many other chronic disabling illnesses. One of the controversies surrounding ME/CFS is over whether or not the symptoms are brought on by depression. with no underlying organic illness. Depression may result from devastation of lifestyle - e.g. loss of job or marital breakdown. It can also be a direct result of viral activity. and be caused by circulating Iymphokines (as in influenza), and depression may be an early symptom of relapse. Many patients with ME/CFS have been treated for depression for prolonged periods. with no other diagnosis looked for. nor any proper advice about rest given. This increases distress and may worsen disability, as the patient has to fight to have the physical nature of their condition recognised.

Allergies: The development of hypersensitivities to a range of foods and/or chemicals is common in ME/CFS, due 10 altered immune function. Exclusion of a few commonly allergenic foods (e.g. wheat. cow's milk, eggs) may improve some symptoms. Intolerance of alcohol is a universal complaint, possibly due to liver involvement, or sensitivity to the chemicals in most alcoholic drinks.

Gut problems: These frequently arise, especially irritable bowel, constipation, bloating, abdominal pains, and sometimes malabsorbtive stools alternating with constipation. Gut symptoms may be due to continual active enteroviral infection. Another explanation is that there is a disturbance of the normal bowel flora ('dysbiosis'), suggested by the frequency of these symptoms when a patient has had a course of broad-spectrum antibiotics along with the precipitating viral illness.
Candida overgrowth: Candida (yeast) overgrowth and hypersensitivity to moulds seems to be common in ME/CFS Candida Albicans is a universal commensal which proliferates in conditions of reduced patient resistance. It may itself affect immune function. and many cases of apparent multiple allergy may be secondary to Candida overgrowth. It is suggested that in the gut it may alter its morphology to a mycelial form, and penetrate the bowel endothelium, allowing larger than normal protein molecules to enter the portal circulation and trigger an immune response. Symptoms may include:
- Distension after meals, alternating diarrhoea and constipation. itching around the anus, or even 'dhobie itch' rash.
- Persistent thrush, vaginal itching or discharge, fungal infection of skin or nails, mouth ulcers.
Joint pains.
- Symptoms worse in damp weather or buildings, worse after consuming sugars or alcohol.
- Chemical sensitivities.
- Premenstrual bloating, irritability and headache.
- Sour, yeasty smelling body odour; unexplained mental changes especially depression.
Prognosis
This is variable and unpredictable. Many patients gradually recover over a period of months or years. For those who have been ill for several years the prospects of a full recovery are slight. Even after apparent recovery, the risk of severe relapse remains following further infection or overactivity. A small, but not insignificant number of sufferers seem to deteriorate steadily despite rest, and become severely disabled.
GP Management
There is no single treatment for ME/CFS rather, the illness has to be managed in a way most appropriate to each individual patient. Early diagnosis leads to the patient being able to rest properly. Those who 'battle on' or try to work it off are more likely to become chronically disabled. Diagnosis allows sickness certification, and (hopefully) understanding from employers or school.
Advice to rest and avoid unnecessary exercise, and to alter lifestyle to reduce symptoms. The patient may need to give up work or school for six months or longer. Return to work needs to be gradual. A child may be able to return to school pan time, but will have to avoid sports for a long time. Cases are known of children recovering from ME/CFS forced to do sports, who have relapsed severely for months afterwards.
Gentle exercise should be within the patient's capabilities. This is very variable for severely affected patients, getting to the bathroom and back may be the equivalent of a five mile walk! With sustained improvement, a cautious increase in exercise can be encouraged e.g. gentle walking, but if overdone will lead to relapse. Most patients find their own safe limits, and should not be pressurised to exceed them. 'Graduated Exercise Programmes' (recently promoted as a 'cure' by some doctors) can be dangerous, and may cause prolonged relapse or deterioration. There is no evidence from controlled studies that graduated exercise is beneficial.
Diet. Encourage a healthy fresh food diet, which avoids alcohol and junk food.
The patient should not smoke, and should minimise exposure to chemicals in the home.
Sleep disturbance. Hypnotics may be needed, but if sleep is severely disrupted and accompanied by depression, then a sedative type of tricyclic for a few months may help (e.g. Prothiaden, starting at 25-50mg nocte).
Antidepressants such as Prothiaden work for some, and may also improve muscle pain and fatigue. However, some patients experience severe side- effects. and there is no evidence that antidepressant therapy cures ME/CFS itself.
Vitamin B12 injections. These have been reported as helpful. for muscle weakness and neurological symptoms; there are no published results of 812 trials.
Many patients report benefit from taking supplements of vitamin C, evening primrose oil (gamma linoleic acid), B vitamins. magnesium and zinc.

All these nutrients are essential for immune function, and those with symptoms suggestive of poor absorption may need them. Megadosing is wasteful, and may be harmful.
Probiotics (e.g. Acidophilus, or daily live cultured yoghourt) help restore the balance of bowel flora, especially following antibiotics. Patients with symptoms of fungal infection (see above) may benefit from treatment with Nystatin or Fungilin (Amphotericin B), together with a low yeast and sugar-free diet, plus probiotics. controlling secondary fungal infection does not cure ME/CFS, but can make life more bearable, and frequently helps alleviate depression.
Anaesthetics, immunisations, and antibiotics all seem to have bad effects on ME/CFS patients, and are best avoided unless essential. If antibiotics are considered essential, then probiotics or yoghourt should be recommended at the same time.
Dental treatment makes many ME/CFS patients worse temporarily; but any septic foci in the mouth need to be cleared up, so dental examination should not be avoided.
Alternative therapies. Many ME/CFS patients may turn to so-called alternative medicine to help their symptoms. This is quite understandable in a condition for which allopathic medicine has few answers. Providing the therapist is properly qualified, harmful results are unlikely. Patients need to know that no one therapy will magically eliminate their condition, and those who spend a lot of money and energy searching for a cure may be disappointed (this also applies to orthodox treatments).
Acupuncture may help pain and insomnia.
Massage with essential oils seems to benefit pain and muscle spasms.
A good naturopath may be able to help with diet.
Relaxation and meditation techniques can be very useful to those well enough to learn them. Their practice reduces tension and encourages real rest.
The Importance of the Doctor-Patient Relationship

Early diagnosis and subsequent support and follow-up can be crucial to recovery, and diagnosis is the starting point for social services support. Hardship and anxiety, resulting from loss of income through being too ill to work, hinder recovery and encourage despair. Mothers with small children may need special help. Those who can rest early in the illness - i.e. during the first year, will have a better chance of recovery.
Unfortunately many people with ME/CFS have met with scepticism and criticism from their doctors. Beliefs that ME/CFS 'does not exist' as a disease entity, that patients are malingering, hysterical or exaggerating, serve to increase the confusion and misery caused by the disease. These attitudes have led to many sufferers regarding doctors with defensiveness and hostility.
In practice, the vast majority of ME/CFS sufferers want to get better and rejoin the rest of the world. A common cause of relapse is when a patient feels a bit better, attempts a higher level of activity, and collapses. It is important that doctors encourage patients with ME/CFS to pace themselves carefully, and to take their illness seriously.
Current Research Findings

Current research shows evidence of persisting viral infection affecting muscles and central nervous system, with immune dysfunction. Re- search in Glasgow has shown that patients with ME/CFS have very high levels of circulating Interleukin (a Iymphokine produced by T cells in response to a virus) compared to healthy controls. In trials of treatment with Interferon or Interleukin on cancer patients, there were side-effects of muscle pain, exhaustion, mental confusion and weakness. Other research at the same centre in Glasgow has revealed abnormalities in mitochondria in muscle tissue.
Studies on muscles of sufferers have demonstrated:
- Enterovirus in muscle cells (Dr L Archard, Charing Cross)
- Abnormalities from single-fibre electromyography (Dr G Jamal, Glasgow)
- Excessive intracellular acidosis in muscle cells after exercise (NMR study by Dr D Arnold, Oxford)
- Reduction in amount and turnover of muscle RNA (Prof. Peters, Kings College)
Recent studies from the USA have demonstrated a range of neurological abnormalities in ME/CFS patients, including lesions in brain tissue.
Dr Anne MacIntyre
Please Note: .Patients requiring further information about ME/CFS or the ME/CFS Action Campaign may send an SAE to: ME. Action. PO Box 1126. London W3 ORY for a free factsheet.

Commonly Asked Questions about M.E./C.F.S.

I (Mike) am often asked questions about M.E./C.F.S., especially by those seeking help for the first time. Recently the committee decided that more information should be put in Pathways to help members understand and manage their illness. The following feature is based on what preliminary information about M.E./C.F.S.is requested. We intend to deal with each aspect in each of the future Pathwayss.

What does M.E./C.F.S. mean?

M.E./C.F.S. is an acronym (short name) for the following conditions: Myalgic Encephalomyelitis (M.E.).Post Viral Fatigue Syndrome (P.V.F.S.) & Chronic Fatigue Syndrome (C.F.S.). Myalgic: pain /inflammation of muscle tissue, Encephalo: of the brain, Myelitis: of the spinal cord. The name refers back to specific outbreaks in the 1950s & 1960s. It is acknowledged the Encephalomyelitis is not very often seen, so doctors prefer to use Chronic Fatigue Syndrome instead, which follows a modern trend for observational rationalization of names in medicine.

How does M.E./C.F.S. Start?

It is triggered by a viral infection and/or other life trauma or incident or stress, e.g. vaccinations, accidents, environmental poisons OR by gradual onset, unnoticed until something makes someone realize something is wrong.

How is M.E./C.F.S. Classified?

M.E./C.F.S. is a multi system illness. The nervous & immune system are mainly involved. The World Health Organisation (W.H.O.) classification is 'Neurological Conditions'.

What are the main symptoms of M.E./C.F.S.?

Muscle Fatigue: Abnormal muscle fatigue brought on by normal activity. All symptoms are made worse by over-exertion, even minimal activity, and are disproportionate to the effort expended. The onset of fatigue may be delayed up to 72 hours, from which recovery takes many days, weeks, months,.or years.
Pain Sensation: Severe headache, abdominal pains, back, neck or facial pain, unlike any previous pain, changing from day to day. Joint pain and swelling, muscle pain and tenderness.
Neurological Problems: Poor concentration, short term memory loss, disturbances of sensation, poor co-ordination, balance problems, impaired or confused speech, tinnitus, blurred or distorted vision.
Autonomic Nervous System: Palpitations, rapid pulse, sudden pallor, poor circulation and temperature control, diarrhoea and bladder dysfunction.
Sleep Disturbance: Initially over-sleeping then insomnia, early wakening, vivid/unpleasant dreams and abnormal sleeping patterns ('Night Owls').
Emotional: Reactive depression, low mood being directly related to the severity of illness.

How is M.E./C.F.S. diagnosed?

There is no one specific test. Doctors take a careful history, clinical examination and exclude other conditions which could mimic M.E./C.F.S. It is differentiated from other common 'post-flu' debilities by the presence of symptoms in varying degrees for 6 months or more, along with fatigue sufficient to reduce daily activities by at least 50%.

What has gone wrong?

Opinions differ greatly. There are at least two subtypes of M.E./C.F.S. One or more of the following is true in most cases:
a) The immune system behaves as though a persistent virus is present. Cytokines are produced by the immune system causing 'flu like' symptoms affecting nerve & muscle tissue.
b)Viral D.N.A. has been found in blood cells, muscle and brain tissue.
c) S.P.E.C.T. scans show reduced blood flow to the brain stem. There are Hypothalamic & Pituitary disturbances causing hormonal and neural function disturbances.
d) There are transient abnormalities in red blood cells surface & shapes.
e) There are disturbances in the mitochrondria (cell power station) & A.T.P. Metabolism.
f) Abnormalities have been found in immune system T. cell & N.K. subsets.

What are the chances of recovery?

In 20-25% of cases recovery takes place within a year and is complete. Children have the best chance, but recovery can take 3-5 years. In 50-60% of cases partial recovery occurs over several years, BUT only with major lifestyle changes. 25-30% remain permanently disabled. A small number, about 1%, are bed bound. 1-2% will be suffering from some other major illness, most of which can be teated successfully. Relapses are common.

Are there Myths about M.E./C.F.S.?

'M.E. is all in the mind'. Any doctor holding this view is mistaken.

Are there any treatments for M.E./C.F.S.?

The only effective treatment is complete rest. The sooner started the better the chances of recovery. Most of the symptoms except fatigue can be controlled by medicines & various therapies.

Are there any common complications?

a) 'Depression like' symptoms, technically different and related to the severity of the illness. These may co-exist with reactive depression due to consequences of M.E./C.F.S. Both problems respond to low doses of T.C.A.D. antidepressants in most cases.
b) Dysfunctional Gut Syndrome (D.G.S.), similar to Irritable Bowel Syndrome. Neural & Immune System dysfunction leads to abnormal gut flora, causing food & chemical intolerance. Small amounts of irritants can cause a major relapse. This can be tested for and treated with medicines & dietary modifications.

How many people are affected in the U.K.?

About 1-1½ in every 1000. For Doncaster there will be between 300-450 of which we know of about 200. There are estimated 150,000 in the U.K. Many may not know they have M.E./C.F.S.

What sort of people get M.E./C.F.S.?

Mostly aged 30-40 years. Cases occur between 5-86 years. Health workers & those stressed dealing with many people seem to be the worst affected. Women are prone. C.F.S./M.E does not acknowledge income, marital status, social status or lifestyle & may complicate other major illness e.g. Diabetes, Asthma & Coeliac disease.

Are there any famous people who suffer from M.E./C.F.S.?

Clare Francis, ‘Around the world Yachtswoman’. Florence Nightingale, the nursing pioneer.
T.V. personality Esther Rantzen’s daughter & the Duchess of Kent.

Can I attend School or College with M.E./C.F.S.?

No one should be forced who is ill. Games & physical activity restricted. Attendance may be limited, or a home tutor may be needed. Co-operation of the School, Teachers, Doctors & Parents are essential.

Can I continue to work with M.E.?

In some cases light work may be possible with reduced hours, but needs a protected environment supervised to avoid a relapse as stress of any kind hinders recovery. In many cases, the unpredictability is incompatible with what an employer would reasonably expect, as no guarantee can be given about fitness to work at any one time or the quality of work that can be expected. Employers are firstly sympathetic, but when it becomes clear that the illness may be long term, problems occur. Take careful advice from Unions, Solicitor or Doctor. No one should resign or accept an offer without professional guidance. In most cases an occupational pension or state benefits are paid.

How can I best help myself now?

* Keep a diary of your problems (useful later).
* Ask your Doctor to consult a Specialist.
* Join MEDALS & Action for M.E.
* Give your G.P. an 'Information for Doctors' sheet.
* Consider multivitamins as your G.P. advises.
* Avoid known stress factors, foods & chemicals.
* Apply for state benefits. I.C.B. , D.L.A., S.D.A. etc.
* Check with your G.P. about any complimentary therapies you are considering.

What should I not do?

* Expose yourself to any form of stress.
 

Encephalomyelitis out, Encephalopathy in.

Dr. Melvyn Ramsey (photo) explains in his book ‘Myalgic Encephalomyelitis and Postviral Fatigue States’ that the Polio outbreaks were seasonal, between late summer to early autumn. Polio (Poliomyelitis) is a disease rarely seen these days. It starts with a gastric flu like illness then after an apparent recovery some patients developed permanent lifelong paralysis. It was well known that those who were affected were those who were physically active at the time of infection.

But the 1955 season was different for the Royal Free Hospital. On July 13th a doctor and a ward sister were admitted with an obscure illness. July 25th saw 70+ staff affected. The hospital had an epidemic of a virulent virus. This virus was similar to polio. The hospital closed until October 5th, although sporadic cases appeared up to the end of November. 292 members of staff were affected. Many were admitted to hospital. Although the hospital was full at the time, and only 12 patients developed the disease. In otherwords the disease didn’t affect those resting in their bed. It hit the workers. The people had pain (myalgia), brain problems (encephalitis), and spinal chord problems (myelitis), hence the name Myalgic Encephalomyelitis. There are still a number of patients disabled today from that outbreak. During that period there were many similar epidemic outbreaks around the world.

It was known in the early 19th Century if anyone suffered from Cowpox, it gave lifelong immunity to its sister disease,.smallpox, a major killer. An M.E. epidemic occurred in 1948 in Akureyri Iceland, that had conferred immunization against polio in the following year’s outbreak. It was smaller than expected. Likewise, we do not see much epidemic M.E. today because of polio widespread vaccination.

These days viral triggered M.E. is common, but so are cases where no viruses have been involved. After much research no single culprit has been found. M.E. is some sort of damage to the nerve, muscle and the immune system and sometimes other organs which may, or may, not be reversable. If you think about how you can break a leg, - car accident, playing sport, falling, the cause is analogous to the triggering event or illness. Eventually most fractures will heal, but there will always be a scar, weakness, tender point, or tendency for arthritis. In otherwords the leg will never quite be the same after, this is analogous to M.E.

The controversy over the name M.E. started when two Psychiatrists, Drs. McEvedy and Beard declared that the Royal Free Outbreak was 'mass hysteria’ in 1960. Controversy magnifies itself, this being the root of the discrimination we see today. As we don’t see the epidemic form of M.E. with ‘myelitis’, many doctors do not accept M.E. So a more acceptable alternative has been found. The ’M’ for Myalgic (muscle pain) stays, but the ‘myelitis’ goes. In its place the ‘E’ Stands for Encephalopathy. This means anything affecting the brain. I don’t think anyone in M.E. circles would dispute this, AND it may even be more palatable to the sceptics.

What happened to Polio? Thanks to vaccination it is rare in the U.K., the annual number being in single figures. Like M.E. there are many victims today who are still affected. Mike.

See your Doctor and keep in touch regularly.

I get very worried when people tell me that they haven't see their doctor in years. There are numerous reasons like “He can’t do anything for me”. “He does not believe in M.E.”. “He thinks I’m wasting his time”. What your doctor is paid for via you by the state is to look after your health. If for any reason you don’t trust your doctor or don’t get along with him/her, then change. There is no point in carrying on a relationship that doesn’twork. Very often in a practice of several doctors, there may one who is interested in M.E.

You doctor is not a magician. He cannot cure M.E., but is your gateway to treatment. He can prescribed drugs like antidepressants, pain killers etc. You cannot get access to N.H.S. specialists e.g. the Leeds Fatigue Clinic without a G.P. referral. You need him for example to get access to the other NHS services like the Pain Control Clinic. Really everyone with M.E. should visit their doctor at least every six months. This will enable him to follow your case, and adjust treatments etc. as required.

Another reason you should keep in contact with your doctor is for DSS benefits. When benefits are claimed, the DSS send questionnaires to your doctor without your knowledge. It is important that he knows your problems, especially if benefits are disputed. It is difficult to prove your case without his support. Ideally everyone should attend a specialist like the Leeds Fatigue Clinic at onset, and be seen every year. The economics of the NHS make this a dream rather than a reality. M.E.’s very often can suffer other medical conditions, or new conditions may arise. It is important that they are screened for, and checked. They may be more serious than M.E. or may just aggravate the fatigue. The important thing is that something is done about it. Here are examples why:-
One lady delayed a thyroid operation because it would aggravate her M.E. After I talked to her, she had the operation and is very much better, but still has M.E.
Another person was diagnosed with bowel cancer. He delayed treatment six months using alternative treatments, being afraid it would affect his M.E. He eventually had the operation, ending up with a colostamy, and eventually died of cancer. He would have had a better chance of survival had treatment started earlier.
One member had bad M.E. No one seemed to be able to help her. She was a regular at a local A&E department. Various things like electric shock therapy were tried. Eventually a consultant realized she had high blood pressure which is not a symptom of M.E. A full clinical investigation revealed a non cancerous kidney tumour . This was operated on successfully, clearing the hypertension and the fatigue.
From the Hull newsletter, a case of Moresch Woltmann (Stiff Person) Syndrome, a rare clinical condition similar to M.E., but unknown to many doctors. It was detected after five years only because the person had kept in touch with his doctors.

It is therefore our policy that before anyone is accepted for membership they have a diagnosis of M.E. from a doctor. It is then the policy that they are encouraged to attend a M.E. clinic like Leeds, who will check the diagnosis IS M.E., and not something that mimics it. A significant number of patients at the Leeds Fatigue Clinic have an alternative or addition diagnosis.

If your doctor is not sure about M.E., we have a leaflet ‘Information for Doctors’, which most doctors are pleased to accept. Alteratively it can be downloaded from the groups website at http://www.afme-doncaster.org.uk.
Mike

Update about Antidepressants in ME/CFS

One of the few generally agreed successful management tools of ME/CFS are TCAD antidepressants. Antidepressants comes in three main types TCAD, SSRI and MAOI. MAOI’s are second line, and are only used when TCAD’s and SSRI’s fail. Research has shown that Prozac a SSRI does not effect the outcome of ME/CFS. In common with other chronic conditions e.g. Multiple Sclerosis (M.S.) co-existing clinical depression occurs in many cases, and SSRI’s may help then. Research at the Leeds Fatigue Clininc has shown the same proportion of CFS/ME patients suffer from depression as do M.S. Some doctors cannot separate the CFS/ME from clinical depression, so an antidepressant drug may be given for the wrong reason. When TCAD’s are given in CFS/ME, they are for symptom control and a management tool using the anticholinergic side effects, but not affecting the disease process directly. Some people get worried because they are given TCAD’s, but are not depressed. This is nothing new. They have been used for sleep problems, bedwetting and pain control .

Dr.Myhill writes In April 1998, I was at the British Society for Allergy, Environmental and Nutritional Medicine where Dr. David Smith presented his views on the treatment of CFS using cocktails of low dose antidepressants. His theory is that CFS patients have low levels of neurotransmitters across the board, namely acetylcholine, noradrenaline, adrenaline, dopamine, GABA, serotonin and probably others. It is this which causes the multiplicity of symptoms including fatigue. He has concluded from his studies and his experience with patients that the fatigue in CFS is central - that is to say the cause is within the brain. These abnormalities are within the mid-brain, thalamus and hypothalamus and are neurological in origin. His view was that persistently low levels of neurotransmitter lead to depletion of receptor sites and one one gets in a vicious circle of poor levels of neurotransmitters causing reduced receptor sites and the whole situation becomes chronic.

Dr. Smith held the view that CFS/ME patients would not recover without restoration of receptor sites. Antidepressant drugs are thought to work by increasing the levels of neurotransmitters in the brain. They do so by slowing the rate at which the transmitters are broken down in the brain. Dr. Smith believes that this can be achieved by low dose cocktails of antidepressants. However, I tried these cocktails for several patients but they just developed the side effects that I see in most of my patients with any one antidepressant. I was not impressed by this approach and would not particularly recommend this line.’ However I often find low doses of TCAD’s help. The dose is too low to have an effect on mood so I am not using them for their antidepressant effects.

I (SM) quite commonly recommend one of the sedating antidepressants to take at night. (These can also be helpful if hyperventilation is a problem). The key to using antidepressants is to start with small doses. CFS/ME seem to react to higher doses. This may be because their liver enzymes do not seem to clear drugs from the blood stream as they should (incidentally this may be partly why CFS/ME don't tolerate alcohol) or it may be there is a hypersensitivity in the brain. The most commonly used in are Amytriptyline 0-75mgs, Dothiepin 25-75mgs, or Trimipramine 10-75mg given at night.

I have not been impressed by the SSRI 5HT reuptake inhibitors like fluoxetine (Prozac) or sertraline (Lustral). They are non-sedating and possibly mildly stimulant - therefore not indicated in CFSs (they increase the desire, add nothing to the performance thereby increasing the frustration and rage). There is no doubt they are effective in treating depression and if this is a big problem I sometimes combine them with one of the above antidepressants. Again, they need to be started in very small doses. The list of side effects in BNF also distresses me. Ed note.Lilley, the manufacturers of Prozac have revised their data sheets and omit ME/CFS . The make interesting reading. Internet users can view this on www.bnf.org

St. John's Wort (hypericum) may be useful. It seems likely that CFS patients have low levels of neurotransmitter across the board. This is suspected because many are helped by very low doses of antidepressant - an effect different from their antidepressant effect St. John's Wort is a herbal antidepressant which works by blocking the breakdown of neurotransmitters. Some caution is needed. I have two patients made much worse by St. John's Wort. Don't take more that 300mgs (one tablet) daily initially. The usual dose for depression is 900mgs daily, but since most CFSs react badly to "normal" doses of antidepressant, try higher doses with care. St. John's Wort tablets 200mgs.

Recent research from the Committee on the Safety of Medicines has identified St. John’s Wort has having many side effects and interactions with conventional medicines, which if it was a conventional medicine would make it unmarketable. My view is that it is only safe to try it IF it is the only medicine you are taking, otherwise leave it alone unless your doctor says otherwise. I have had reports of a patient transferring from St. John’s Wort (300mg) to Amytriptyline 10mg daily and working just as well.

You Write:-

Carolyn Writes: I have been attending the Leeds Fatigue Clinic, and mine and other follow up appointments have been cancelled indefinitely. Has the clinic closed ?
We passed this on to Simon Ounsley (Leeds Group Chairman). “I spoke to the OT’s a few days ago and all was well. Though we have heard that Dr. Esterhausen, the psychiatrist, has left, and they are now without a psychiatrist. Presumably the appointments will the suspended until a replacement doctor is found. If an emergency arises, Dr. Stanley is still available, but a note from a G.P. is needed for this”.
Christine Writes: Was very, very, impressed by your Newsletter!!! and all the activities. Full of zest and ZINC are we???? Unfortunately, I live in London (not far from Wimbledon).
Yvonne Writes: Thank you for the brilliant newsletter....always a 'good read'.
Carole writes: I’ve just been to see my doctor. He has prescribed me ‘Epilim’. When I got home and read the information sheet it says it’s for treatment of epilepsy. Has he made a mistake ?
We asked around at Action for M.E. In their information for G.P.’s sheet they indicate Epilim & Tegretol (both used in the treatment of epilepsy) for pain control.
Areas affected
in M.E.
 

‘Debilitating disease still not officially recognised!’

by Stuart Chandler

Reprinted from Doncaster Free press Page 12 3rd May 2001.

Eleven years ago Marion Jones had a bout of 'flu. She still hasn't recovered from the after-effects. Following the initial illness she suffered extreme fatigue. Her voluntary work suffered and she eventually ended up bed bound for three years. She was diagnosed with a post viral condition by doctors and advised to rest. Marion, 53, is now in a wheelchair, and is looked after by her husband, Malcolm. She can no longer work, can barely move during the first part of the day and has developed chemical intolerances. Her chances of recovery, according to her doctors, are slim, she may not recover at all. Marion now knows that she suffers from M.E. (Myalgic Encephalomyelitis) the disease which used to be called "yuppie flu."

According to the national organisation, Action for ME, the condition affects an individual at a physical, mental and emotional level. Symptoms include extreme fatigue, muscle pain, flu like malaise, difficulties with concentration and memory, loss of balance, and alcohol intolerance. Some sufferers also experience digestive problems, food allergies, visual disturbances, migraines, sleep disorders, poor temperature control and mood swings. Symptoms fluctuate wildly, with frequent periods of remission and relapse. People's lives, careers, relationships and families can be torn apart. The organization says that M.E. has no identifiable cause, but the most common trigger appears to be a viral infection. There have been insufficient studies to give exact figures but it is likely that around 150,000 people in the UK have ME. Around 20 per cent are children.

According to the local group, there are about 450 people in the Doncaster area with the condition. Mike Valentine of Action for ME, Doncaster, said:- "These figures are based on estimates because ME is not officially recognized. Those who have the condition are treated by enlightened G.P.’s, private practitioners or alternative therapists. The syndrome is not life threatening. "But the suicide rate among sufferers M.E. is high because the symptoms can very easily lead to depression," said Mike.

Marion, who lives in Branton, said:- "I'm so lucky to have Malcolm to look after me, this condition is so debilitating, people have tried to be understanding but they don't know what the pain is like. The fatigue is not simply tiredness, it's complete inability to do anything.


Encephalomyelitis out, Encephalopathy in.

Dr. Melvyn Ramsey (photo) explains in his book ‘Myalgic Encephalomyelitis and Postviral Fatigue States’ that the Polio outbreaks were seasonal, between late summer to early autumn. Polio (Poliomyelitis) is a disease rarely seen these days. It starts with a gastric flu like illness then after an apparent recovery some patients developed permanent lifelong paralysis. It was well known that those who were affected were those who were physically active at the time of infection.

But the 1955 season was different for the Royal Free Hospital. On July 13th a doctor and a ward sister were admitted with an obscure illness. July 25th saw 70+ staff affected. The hospital had an epidemic of a virulent virus. This virus was similar to polio. The hospital closed until October 5th, although sporadic cases appeared up to the end of November. 292 members of staff were affected. Many were admitted to hospital. Although the hospital was full at the time, and only 12 patients developed the disease. In otherwords the disease didn’t affect those resting in their bed. It hit the workers. The people had pain (myalgia), brain problems (encephalitis), and spinal chord problems (myelitis), hence the name Myalgic Encephalomyelitis. There are still a number of patients disabled today from that outbreak. During that period there were many similar epidemic outbreaks around the world.

It was known in the early 19th Century if anyone suffered from Cowpox, it gave lifelong immunity to its sister disease,.smallpox, a major killer. An M.E. epidemic occurred in 1948 in Akureyri Iceland, that had conferred immunization against polio in the following year’s outbreak. It was smaller than expected. Likewise, we do not see much epidemic M.E. today because of polio widespread vaccination.

These days viral triggered M.E. is common, but so are cases where no viruses have been involved. After much research no single culprit has been found. M.E. is some sort of damage to the nerve, muscle and the immune system and sometimes other organs which may, or may, not be reversable. If you think about how you can break a leg, - car accident, playing sport, falling, the cause is analogous to the triggering event or illness. Eventually most fractures will heal, but there will always be a scar, weakness, tender point, or tendency for arthritis. In otherwords the leg will never quite be the same after, this is analogous to M.E.

The controversy over the name M.E. started when two Psychiatrists, Drs. McEvedy and Beard declared that the Royal Free Outbreak was 'mass hysteria’ in 1960. Controversy magnifies itself, this being the root of the discrimination we see today. As we don’t see the epidemic form of M.E. with ‘myelitis’, many doctors do not accept M.E. So a more acceptable alternative has been found. The ’M’ for Myalgic (muscle pain) stays, but the ‘myelitis’ goes. In its place the ‘E’ Stands for Encephalopathy. This means anything affecting the brain. I don’t think anyone in M.E. circles would dispute this, AND it may even be more palatable to the sceptics.

What happened to Polio? Thanks to vaccination it is rare in the U.K., the annual number being in single figures. Like M.E. there are many victims today who are still affected. Mike.

Action for M.E.

Action for M.E. is a UK based national membership organisation and registered charity (Reg no 1036419). It is supported by its members (people with ME), by generally well people and by donations from local ME support groups, businesses and trusts.

The aims of Action for M.E. are:
To campaign for more recognition, research and better care and benefits for M.E. sufferers.
To fund research, particularly into treatments for M.E.
To raise awareness of M.E. within the Government, media, healthcare organizations. and the general public.
To provide information, self-help and support services to people with M.E., their carers, family and friends.

For further information telephone (01302) 787353.
See your Doctor and keep in touch regularly.

I get very worried when people tell me that they haven't see their doctor in years. There are numerous reasons like “He can’t do anything for me”. “He does not believe in M.E.”. “He thinks I’m wasting his time”. What your doctor is paid for via you by the state is to look after your health. If for any reason you don’t trust your doctor or don’t get along with him/her, then change. There is no point in carrying on a relationship that doesn’t work. Very often in a practice of several doctors, there may one who is interested in M.E.

You doctor is not a magician. He cannot cure M.E., but is your gateway to treatment. He can prescribed drugs like antidepressants, pain killers etc. You cannot get access to N.H.S. specialists e.g. the Leeds Fatigue Clinic without a G.P. referral. You need him for example to get access to the other NHS services like the Pain Control Clinic. Really everyone with M.E. should visit their doctor at least every six months. This will enable him to follow your case, and adjust treatments etc. as required.

Another reason you should keep in contact with your doctor is for DSS benefits. When benefits are claimed, the DSS send questionnaires to your doctor without your knowledge. It is important that he knows your problems, especially if benefits are disputed. It is difficult to prove your case without his support. Ideally everyone should attend a specialist like the Leeds Fatigue Clinic at onset, and be seen every year. The economics of the NHS make this a dream rather than a reality. M.E.’s very often can suffer other medical conditions, or new conditions may arise. It is important that they are screened for, and checked. They may be more serious than M.E. or may just aggravate the fatigue. The important thing is that something is done about it. Here are examples why:-
One lady delayed a thyroid operation because it would aggravate her M.E. After I talked to her, she had the operation and is very much better, but still has M.E.
Another person was diagnosed with bowel cancer. He delayed treatment six months using alternative treatments, being afraid it would affect his M.E. He eventually had the operation, ending up with a colostamy, and eventually died of cancer. He would have had a better chance of survival had treatment started earlier.
One member had bad M.E. No one seemed to be able to help her. She was a regular at a local A&E department. Various things like electric shock therapy were tried. Eventually a consultant realized she had high blood pressure which is not a symptom of M.E. A full clinical investigation revealed a non cancerous kidney tumour . This was operated on successfully, clearing the hypertension and the fatigue.
From the Hull newsletter, a case of Moresch Woltmann (Stiff Person) Syndrome, a rare clinical condition similar to M.E., but unknown to many doctors. It was detected after five years only because the person had kept in touch with his doctors.

It is therefore our policy that before anyone is accepted for membership they have a diagnosis of M.E. from a doctor. It is then the policy that they are encouraged to attend a M.E. clinic like Leeds, who will check the diagnosis IS M.E., and not something that mimics it. A significant number of patients at the Leeds Fatigue Clinic have an alternative or addition diagnosis.

If your doctor is not sure about M.E., we have a leaflet ‘Information for Doctors’, which most doctors are pleased to accept. Alteratively it can be downloaded from the groups website at http://www.afme-doncaster.org.uk.
Mike


Update about Antidepressants in ME/CFS

One of the few generally agreed successful management tools of ME/CFS are TCAD antidepressants. Antidepressants comes in three main types TCAD, SSRI and MAOI. MAOI’s are second line, and are only used when TCAD’s and SSRI’s fail. Research has shown that Prozac a SSRI does not effect the outcome of ME/CFS. In common with other chronic conditions e.g. Multiple Sclerosis (M.S.) co-existing clinical depression occurs in many cases, and SSRI’s may help then. Research at the Leeds Fatigue Clininc has shown the same proportion of CFS/ME patients suffer from depression as do M.S. Some doctors cannot separate the CFS/ME from clinical depression, so an antidepressant drug may be given for the wrong reason. When TCAD’s are given in CFS/ME, they are for symptom control and a management tool using the anticholinergic side effects, but not affecting the disease process directly. Some people get worried because they are given TCAD’s, but are not depressed. This is nothing new. They have been used for sleep problems, bedwetting and pain control .

Dr.Myhill writes In April 1998, I was at the British Society for Allergy, Environmental and Nutritional Medicine where Dr. David Smith presented his views on the treatment of CFS using cocktails of low dose antidepressants. His theory is that CFS patients have low levels of neurotransmitters across the board, namely acetylcholine, noradrenaline, adrenaline, dopamine, GABA, serotonin and probably others. It is this which causes the multiplicity of symptoms including fatigue. He has concluded from his studies and his experience with patients that the fatigue in CFS is central - that is to say the cause is within the brain. These abnormalities are within the mid-brain, thalamus and hypothalamus and are neurological in origin. His view was that persistently low levels of neurotransmitter lead to depletion of receptor sites and one one gets in a vicious circle of poor levels of neurotransmitters causing reduced receptor sites and the whole situation becomes chronic.

Dr. Smith held the view that CFS/ME patients would not recover without restoration of receptor sites. Antidepressant drugs are thought to work by increasing the levels of neurotransmitters in the brain. They do so by slowing the rate at which the transmitters are broken down in the brain. Dr. Smith believes that this can be achieved by low dose cocktails of antidepressants. However, I tried these cocktails for several patients but they just developed the side effects that I see in most of my patients with any one antidepressant. I was not impressed by this approach and would not particularly recommend this line.’ However I often find low doses of TCAD’s help. The dose is too low to have an effect on mood so I am not using them for their antidepressant effects.

I (SM) quite commonly recommend one of the sedating antidepressants to take at night. (These can also be helpful if hyperventilation is a problem). The key to using antidepressants is to start with small doses. CFS/ME seem to react to higher doses. This may be because their liver enzymes do not seem to clear drugs from the blood stream as they should (incidentally this may be partly why CFS/ME don't tolerate alcohol) or it may be there is a hypersensitivity in the brain. The most commonly used in are Amytriptyline 10-75mgs, Dothiepin 25-75mgs, or Trimipramine 10-75mg given at night.

I have not been impressed by the SSRI 5HT reuptake inhibitors like fluoxetine (Prozac) or sertraline (Lustral). They are non-sedating and possibly mildly stimulant - therefore not indicated in CFSs (they increase the desire, add nothing to the performance thereby increasing the frustration and rage). There is no doubt they are effective in treating depression and if this is a big problem I sometimes combine them with one of the above antidepressants. Again, they need to be started in very small doses. The list of side effects in BNF also distresses me. Ed note.Lilley, the manufacturers of Prozac have revised their data sheets and omit ME/CFS . The make interesting reading. Internet users can view this on www.bnf.org

St. John's Wort (hypericum) may be useful. It seems likely that CFS patients have low levels of neurotransmitter across the board. This is suspected because many are helped by very low doses of antidepressant - an effect different from their antidepressant effect St. John's Wort is a herbal antidepressant which works by blocking the breakdown of neurotransmitters. Some caution is needed. I have two patients made much worse by St. John's Wort. Don't take more that 300mgs (one tablet) daily initially. The usual dose for depression is 900mgs daily, but since most CFSs react badly to "normal" doses of antidepressant, try higher doses with care. St. John's Wort tablets 200mgs.

Recent research from the Committee on the Safety of Medicines has identified St. John’s Wort has having many side effects and interactions with conventional medicines, which if it was a conventional medicine would make it unmarketable. My view is that it is only safe to try it IF it is the only medicine you are taking, otherwise leave it alone unless your doctor says otherwise. I have had reports of a patient transferring from St. John’s Wort (300mg) to Amytriptyline 10mg daily and working just as well.

Carolyn asks questions about Vitamin B12 and M.E.

I've been looking at pot of multivitamin and minerals and wondering if I'm getting enough B12.? The makers formulate the amounts to give the correct daily dose.
It reads 30ug and 3000% What does it mean? The microgram (ug) is the weight of the vitamin in each capsule. 1ug is one millionth (0.000001) of a gram. The 3000% is the proportion of the European Community Recommended Daily Amount. No harmful effects occur as a result of a high intake. The EEC RDA’s are advisory.
What does vitamin B12 do ? B12, also known as cyanocobalamin, plays a vital role in the activities of several enzymes (substances that promote chemical reactions in the body). It is important in the production of the genetic material of cells (and thus in growth and development), in the production of red blood cells in bone marrow, in the utilization of folic acid and carbohydrates in the diet, and in the functioning of the nervous system.
I am not eating any red meat these days and that is mainly where we get B12 from?. Foods rich in vitamin B12 include liver, kidney, chicken, beef, pork, fish, eggs, and dairy products. A balanced diet contains sufficient amounts for the body's needs.
Should I be taking a separate tablet of B12 do you think? No, because the supplement you are taking contains more than enough. Deficiency of vitamin B12 is almost always due to an inability of the intestine to absorb the vitamin, most commonly as a result of pernicious anaemia (megaloblastic). Less commonly, deficiency may be an effect of gastrectomy (removal of all or part of the stomach), or result from malabsorption due to an intestinal disorder, or be a consequence of a vegan diet (excludes animal products).
What are the effects if I’m not getting enough B12.? Mainly megaloblastic anaemia, a sore mouth and tongue, and symptoms caused by damage to the spinal cord, such as numbness and tingling in the limbs. There may also be depression and loss memory. Deficiency can occur even though the blood levels are normal and can be treated.

Can B12 be used to treat M.E.? According to the British National Formulary (BNF) is indicated only for a deficiency state. The dose is usually 1000ug a month. Many doctors don’t prescribe B12 outside NHS guidelines because their professional indemnify insurance considerations.
Most B12 vitamin comes as a single vitamin or with multivitamins containing 30-50ug dose. People have taken massive doses by mouth to treat M.E. with no effect. It can enhance the performance of racing dogs. I think it may have worked by increasing the numbers of red blood cells circulating giving a performance advantage.
Information from the U.S.A. suggests that doses for M.E. should start at 1000-2000ug twice weekly by injection, subcutaneously not the usual intramuscular. The effect only lasts 2-3 days. Only about half those who try B12 in this way say it works. In this country B12 is a Presciption Only Medicine (POM). and expensive. Most patients in Doncaster obtain their suppliers from their private M.E doctor. She supplies it as the more economic multi dose vials from the U.S.A with syringes and needles making a total cost of a 15 week course £19.50. for people to inject themselves. Some members are lucky enough have a doctor sympathetic enough to prescribe B12 on the N.H.S.

* In M.E., where the immune system is overactive, patients develop abnormal sensitivities to substances. E.P.D. is a technique to re-educate the immune system and hopefully relieve symptoms. But it does more. It is well know that a Bee or Wasp sting can reset the immune system in some way, and produce a temporary remission of M.E. The injection of foreign substances may produce the same effect as a beneficial side reaction. Ed.

Bernard asks a Question about Enzyme Potentiated Desensitization.

Through the internet I’ve noticed a very impressive clinic in Amsterdam where they claim much with Enzyme Potentiated Desensitization. It it available in the U.K.?

Yes. The snag with E.P.D. is that it is an unlicensed medical product. It is only available to named patients to specifically trained and licensed doctors. This in practice makes it unavailable to most G.P.‘s. In Doncaster the F.H.S.A. will not fund E.P.D. treatment, but some other N.H.S. hospitals and health districts will do. This brings it within the ‘POSTCODE LOTTERY’ like has been seen with treatments of Interferon with M.S. So most people in Doncaster have to pay privately via their M.E. specialist.

GENERAL INFORMATION ON EPD by Dr.S Myhill

EPD is a vaccine used to desensitize patients to both foods, inhalants and chemicals*. It has been developed by Dr. Len McEwen over thirty years. It is supplied to the doctor as a kit who mixes the appropriate dose prior to dosing.

The vaccine contains:1-3 diol - a kind of alcohol which activates the enzyme, used in a tiny dose;-glucuronidase – an enzyme. This appears to act as a lymphocyte hormone (lymphokine). It occurs naturally in human blood. The amount present in the vaccine is equivalent to that normally present in 1cc of normal plasma. In the vaccine it is thought to be responsible for stimulating the Langerhan cells to migrate to the local lymph glands and "reprogram" a new population of T suppressor lymphocytes. In the presence of antigen in the appropriate concentrations, this will result in a desensitization. (Conversely in the presence of antigen at a "wrong" concentration you may get a hypersensitisation).

Because EPD relies on the production of a new generation of cells, the effect of each dose will not be fully developed for at least 3 weeks. Simple allergics, such as hay fever, usually respond to the first dose. But doses of EPD are cumulative and a few of the more complex allergic patients will not start to improve until 8 or more doses have been given over two years. This is the case for many of my CFS patients.
Antigen mixes: The beauty of EPD is that one injection can be used to desensitize to a great many allergens. The following mixes are most frequently used:

”X" - Mixtures of foods, additives, moulds, pollens, cat-dog, flock fly and bacterial
"I" - inhalants alone, used for hay fever, cat, dog, horse, mould and house dust allergies.
Separate mixes of "odds and ends", laboratory animals and sawdusts are also available "Fumes mix" - contains perfume oils, terpenes and other antigens.

Indications For Use: Any condition caused by allergy such as Asthma, eczema, rhinitis, chronic urticaria, angioneurotic oedema.Hyperkinetic syndrome, Migraine and chronic headaches, Irritable bowel syndrome, Inflammatory bowel disease, Food induced psychological states - depression, anxiety, Chronic fatigue syndrome Multiple food allergy In some instances, hyperventilation is caused by food allergy.

I do sometimes use EPD for the worst possible reason, that is I can’t think of anything else to do when all else has been tried. However it is surprising how often this works! Hidden allergies to foods, inhalants and chemicals are common causes of recalcitrant symptoms! One advantage EPD is that it desensitizes across the board.
Antigen Strengths EPD works by manipulating the normal immune processes for creating and turning off allergies. Therefore success or failure depends largely on priming the patient in the best possible way. What makes EPD critical is the amount of antigen present at the injection site, at the time of injection. For the low dose "XØ" strength, the aim is to have approximately 10,000 molecules of each food antigen for desensitization present at the injection site. Most patients receive “XØ”; for food allergy.

For inhalant desensitization of the airways, the best dose (designated "C" strength) is equivalent to that received in a skin prick test. So most patients for seasonal hayfever or asthma would receive IC. Patients with chemical sensitivity receive the fumes mix at “XØ” strength.

Success Rate: A pessimistic estimate would be that EPD will fail in about 20% of suitable patients with known allergies. The rest will experience varying degrees of improvement. Follow up studies after 5 years and double blind trials suggest that EPD has much greater long-term success than any other method of immunotherapy.

Safety: Approximately 350,000 treatments of EPD have been given world wide over the past 30 years. For patients with severe anaphylactic type reactions I first skin test with a tiny dose of antigen. If there is no reaction I then use the "cup" method whereby the epidermis of the skin is scraped off and the vaccine applied in a 1.5 ml. hemispherical plastic container. This can be removed and antigen wiped off in the event of any reaction. About 100,000 treatments have been given by the “cup” method. There have been no life threatening reactions with EPD. It must always be remembered that when foreign antigen is injected the usual safety precautions should be taken. I always carry adrenaline, antihistamines, steroids etc. but I have never had to use them, or even consider using them.

EPD by injection However nearly all treatments given by me are by injection – the enzyme and antigens are all given in one syringe, total volume of about 0.05ml as an intradermal injection. It feels like a bee sting and brings up a small white “lentil” sized lump on the forearm. After a few minutes this usually disappears, but some patients get slight redness and swelling..

Trials: Published double blind trials have shown that EPD is effective in the treatment of seasonal hayfever and asthma (several trials ), ulcerative colitis, childhood migraine and hyperactivity. At the time of writing EPD has also been successful in further double blind trials studying hay fever and childhood house dust mite asthma. Uncontrolled trials have also shown benefit in the treatment of eczema, irritable bowel syndrome, urticaria, rhinitis and asthma. Clinical experience from over 100 clinicians working world wide (and growing) is encouraging. More trials are urgently required.

Allergen Exposure At The Time Of Treatment: Treatment for seasonal allergies should be given at least 4 weeks before the season begins. There is a theoretical risk that one might hyposensitize a patient if he/she is exposed to allergens at treatment time. However, I have now been using EPD for 12 years and have given over 4,000 treatments and have to be convinced that this is a real clinical problem. Therefore there are no special precautions other than avoid known sensitivities. Desensitization for foods works best if the patient sticks to their “safe”, ie non-reacting foods for the 24 hours before and 3 days after the EPD injection. Theoretically there is nothing under the sun, to which one cannot be allergic. It is not uncommon to see patients who have become sensitized to their own gut flora. In these cases it is necessary to reduce the antigen load starting 4 days prior to a dose of EPD. The commonest problem is gut fermentation and drugs used to pretreat include Sporanox and nystatin powder. Allergy to gut bacteria requires pretreatment with antibiotics.

What’s Beyond the Horizon for us ?

A conference took place in January this year organized by the American Association for CFS, in Seattle. The following I think are significant::-
a) There is increasing evidence that the root of ME/CFS is neurological and lies in the brain, with the immune & endocrine system disturbances.
b) Brain activity scans show that an M.E.’s brain works harder to do the same job compared to none M.E.s.
c) Like most other diseases, there are a number of distinct subtypes of the Fatigue Syndromes. Each having its own characteristics, and responding to its own treatments strategy. Until these subtypes are recognized, research will give inconsistent results.
d) Yet another new name has been mooted. Neuro-Immune-Endocrine Dysfuncion. (NIEDS).
e) In the past, the only way to deal with fatigue was by rest and pacing. A few drugs, e.g. Thyroxine, hydrocortisone have been controversially tried with limited success. Stimulants e.g. Amphetamines don’t work. Now there is news of two new drugs specifically to fight fatigue. One is Provigil (Modafinil) which has been used to fight fatigue in multiple sclerosis and has been tried by some ME/CFS patients with encouraging results. The second is Etanercept, a TNF inhibitor, which in a trial has been seen to reduce fatigue. Both these drugs are in the development stage, and will only be generally available after clinical trials to establish the best way to use them, and when safety data have been successfully established. This is the best news I’ve heard for many years.


Update on Work of the NHS Leeds Fatigue Clinic.

By Richard Hawkins, as reported in the Kirklees M.E. Group newsletter October 2001

Although I have had no personal experience of the Chronic Fatigue Clinic' in Leeds I have heard mixed reports from fellow ME sufferers. I therefore grasped the opportunity afforded by the Leeds & District M.E. Group to go to one of their meetings for a talk by two Occupational Therapists from the NHS Leeds Fatigue Service about their work with ME/CFS.

The talk was led by Miranda Thew who, with four years experience in the Service, had recently been appointed to the new position of Clinical Leader. She told us that the Service takes patients from a wide area, with 50 % outside the Leeds postal area from as far afield as Huddersfield, Hull, Teeside, the Midlands and even Cornwall. This success has however, led to a 'massive waiting list'. The current waiting list has 150 patients who have to wait typically 58 to 60 weeks to see the Consultant Dr. Stanley who, if he confirms the diagnosis, places patients on a further waiting list of up to 26 weeks before they start receiving therapy.

The Service has successfully campaigned to obtain more money to develop their service in the aim of reducing the waiting list and improving what they can offer patients. All referrals, which must come from the patient's GP, are now assessed by the new 0.T. Triage who only refer patients to Dr. Stanley or the Psychiatrist if deemed necessary or specifically requested by their GP. Otherwise, patients go direct (after a short wait) to therapy.

Most patients take the 'Group' therapy option which consists of eight weekly½ hour sessions for up to 0 people. It consists of an introduction and discussion of ME symptoms, the analysis and measuring of activity, diet, quality sleep and meaningful exercise, stress reduction and relaxation, dealing with emotions, combating loss of memory and concentration, relationships and reacting to other peoples' perception of the sufferer's condition. This is usually followed by a follow up group session after three months and the option of up to two' top-up, sessions per year.

As an alternative to Group therapy, patients may have individual therapy tailor made to their own specific needs, or less severe cases may have short-term ' one-off advice '. The Service also provides an in-patient service for severely debilitated sufferers in the Leeds General Infirmary and St. James Hospital with the option of home visits after release.

In addition to occupational therapists, the Service also has specialist options including a physiotherapist to provide education on posture, pain management and muscle development, a CBT (cognitive behaviour) therapist and a social worker to provide help with benefits and employment situation.

The Service aims to improve the quality of life for ME sufferers largely by steering patients to a balance between over-activity and non-activity . Whilst Miranda demonstrated that she and her colleagues clearly understand the condition and what sufferers are going through, I nevertheless felt that they may be pushing some patients too quickly into activity. However, having waited up to 1½ years from GP referral to receiving therapy, perhaps their patients have already by default had the all-important rest during the early stages of the illness. By reducing the waiting time to a few months I cannot help wondering whether this may put a different perspective on their therapy program.

Miranda openly admitted that there is an unacceptable confusion, especially amongst GPs, between 'graded exercise' and 'graded activity'. This led onto the inevitable debate about GP's ignorance of the condition in which she urged patients to take up the fight to educate their doctors, both about the condition and the facilities available at the Leeds Fatigue Service.

As from October 2001, the Service will be operating out of a new specially converted ward at Seacroft Hospital offering a more congenial environment, ramp access and easier car parking.

The Service is hoping to develop even further with a dietician and flexibility for patients, e.g. appointment times. They also hope to carry out research into the condition from their past patient database. Their initial aim however, is to reduce that massive waiting list.


You Write.

Carolyn Writes

If you have to stay at home to care for a child ensure that your name is on the child benefit book. It is only the holder of the book that can claim National Insurance Credits. This can have a significant implications for your state pension later on.

Diana Writes
I have heard a lot about ‘Olive tree extract’ from a book and a recent magazine feature. It seems to promise a cure for M.E. I’ve tried of obtain it, but with little success. What’s bottom line ?

When and if a treatment or cure for M.E. is found it will first be tried in hospitals using double blind trials for before general release. Rest assured that Action for M.E. will make sure everyone knows about it.!
Olive Tree extract is just another ‘M.E. cure’ promoted to M.E.’s by (former) M.E. sufferers who claim it has worked for them. I seem to be targeted as I am the group contact. What they say is very plausible, and seems very sincere. Eventually it is suggested that I promote it to the group. Members should try it for a minimum of three months. A money back guarantee is offered. The cost is about £30 a month which is very expensive for M.E.s on basic D.S.S. benefits. Fortunately my training in Pharmacognosy comes in handy. I call their bluff. I’ve experienced this rouse by vendors of ‘Enada’, ‘Aloe Vera’, ‘Matol’ & ‘Intra’.

These people are breaking the law. The 1968 Medicines Act is quite specific that any substance promoted to treat a disease is a ‘medicine’. This applies to herbal preparations, conventional medicines, and food supplements.

They are usually products from the U.S.A., and have the U.S.A.s F.D.A. approval, but not the higher standard of the E.E.C. or U.K. There is a complex licensing system requiring safety data, data in usage etc.

This was implemented from lessons learned in the Thalidomide disaster. The products they sell do not have a U.K product licence. You can tell if is has one, because it will be somewhere in the small print e.g. PL12345/657890. like a car registration number. It’s on packs of Beechams Powers for example. There are no licensed products to treat M.E. or C.F.S.

Some doctors & herbalists use unlicensed medicines. The Medicines Act recognizes this as they are medically trained and know what they are doing.

Confessions of a Supermarket Delivery Driver.

On making our regular supermarket grocery delivery of 4 miles drive from the store to one of our Internet customers, my colleague and I were welcomed into her home with her goods as usual, by the delightful very elderly, and somewhat frail looking owner.

I had often puzzled as to how she made her fortnightly order as she had told us some time ago that she lived alone; there was no sign of a computer in her home, and she didn’t appear fit enough to be making use of some cyber café.

This day I plucked up courage to ask her how she placed her order with us.

‘Oh, it’s simple my dear,’ she replied seriously, ‘my son in New York ‘phones me up and I give him my order which he e-mails to the supermarket along with my payment details and my chosen day and time of delivery, and then I get to see you two to have a nice chat with once a fortnight.’

Trying to hide the chuckles we left, thinking how truly wonderful is this technology that allows a thoughtful son in America to enable his Mother in a small town in Yorkshire to remain so very happily independent ! Anon

A success story in M.E. management.

My name is Liz McDonagh. I was a home economics tutor in my 50's at Rotherham college. Life seemed to going fine until one day I became ill. I had a chest infection, and consequentially I was given antibiotics by my doctor. But things were not quite right. As first things seemed to settle down and I was improving but then I found I had a new set of strange symptoms, violent stomach pains, general aches and pains. Being a conscientious worker, and not being advised otherwise, I soldiered on, ending up collapsing at work.

I was confused. I had problems with my fingers manipulating things. Cooking tasks became a multistage problem. I had problems with walking and getting about. Within three months I was diagnosed with Post Viral Fatigue Syndrome. I eventually took early retirement from my job. I had fallen into the classic M.E. trap of stress and overload.

Fortunately the indigestion problem could be treated successfully with conventional antacids. My doctor prescribed 'Prozac', possibly thinking I had depression. I took two then stopped because they made me worse. At that point I looked for further medical advice. I came across a doctor in Manchester, who suggested fasting for four days. So being at the point of scraping the bottom of the treatment barrel I decided to try it. I had withdrawal symptoms at first, I wouldn't recommend it, but it did prove that food in some way was contributing to my illness. The paralysis and other problems disappeared like magic. So the way forward was an elimination diet to identify what was causing the problems. Porridge & cabbage were identified as culprits. On stopping these the indigestion went as well.

During my illness I joined Action for M.E., the M.E. Association, and Action against Allergy. I joined the local Don & Dearne M.E. group, eventually becoming chair-person. I researched the subject myself looking for answers myself. At that time there was much speculation about the cause on M.E. as there still is today. It was known that in M.E. the immune system is somehow damaged in the sense that is dysfunctional and does strange things. It had been known for many years that people with compromised immune systems from other diseases suffered from fungal overgrowth of a yeast called candida. I thought this could be one of the mechanisms propagating my illness. So I tried a strict 'anti candida' diet just as a experiment at first, but eventually for around 3-4 years. This meant avoiding products containing yeast or sugar e.g. bread which by experiment I know made me worse.

It worked! The confusion, 'brain fog' whose onset was last to arrive went away first. Things became much better and more recently I've taken up Scottish dancing and treated myself to a dog.

Alert: Problems with Dothiepin (a.k.a. Prothiaden or Dosulepin).

A new study shows that patients who have taken the tricyclic antidepressant dosulepin (dothiepin) are at increased risk of ischaemic heart disease. In laymans language heart attacks and related. The risk is similar that that posed by such as diabetes, high blood pressure, smoking and overweigh and is cumulative.

No pattern was found between time since last taking the drug and the risk of heart disease, which, the researchers say, suggests that cardiotoxicity remains long after treatment is stopped. The risk of increased with doses of dosulepin and numbers of prescriptions for dosulepin, suggesting a dose-response relationship. The study was conducted by Dr. Julia Hippisley-Cox, of the University of Nottingharn and involved examining medical records of about 6500 patients. The original study was published din the British Medical Journal ref: 2001;323:666. In laymans terms the level of risk is such that 50 patients would need to be treated with dosulepin for one year in order for one to be harmed.

So how does this affect us? Prothiaden is used by many doctors to treat M.E. symptom, and is one of the few drugs that does help. Fortunately most people with M.E. take very low doses ( between 25-75mg daily ) compared to the doses used to treat depression which could be as high at 225mg daily. So the risk for us is lower for us as a patient group. The good news is that no significant increase was identified for similar drugs amitriptyline and lofepramine both similar TCAD drugs or for S.S.R.I.s.

So what advice it the best way forward for Pathways readers taking dothiepin ? Since dothiepin is a prescription only medicine (POM), it can only be prescribed by a doctor. If you are taking dothiepin don’t suddenly stop taking without his/her advice. It would be prudent to discuss with your doctor about changing over as soon as possible to an alternative as. Alternatives to consider include amitriptyline or lofeprarnine. Experience suggests that low dose amitriptyline starting at 10mg works better.

Dothiepin has been around a long time. I dispensed it in the early 70’s, it being one of the more commonly prescribed drugs at the time. It was known to be cardiotoxic in overdose, but was though to be relatively safe in normal clinical doses. It just goes to show that it takes a long time to learn everything about a drug. Identifying a link between dosulepin and ischaemic heart disease serves as an alert that drugs can have important new effects even when used for a number of years.


Hard facts about M.E.

Our group Myalgic Encephalomyelitis (M.E.) 43% , Post Viral Fatigue Syndrome (P.V.F.S.) 15% Chronic Fatigue Syndrome (C.F.S.) 34%. Fybromyalgia (F.M.S.) 6%. Other names e.g. Nightingale disease, Iceland disease Tapanui Flu.

It is not a new illness - compare to M S - who had heard of that 50 years ago? Epidemic M. E. where people were paralysed (c.f. Polio) Royal Free Hospital Closed 3 months. Not seen now due to cross relationship with polio and widespread vaccination.

Attacks all ages. Norah got it at 82. Now 90. Ten years ago everybody said that children did not get M E- now government figures show that 25,000 children in the UK have this debilitating illness. Average age is 45. 80% Female 20% Male. 45% are Married, the rest single 26% or divorced 21 %. Makes or breaks up marriages.

Average length of illness 6 years. First ill health 10 years, with a 4 year wait for diagnosis. 56% by G.P., 43% by consultant. In 36% sole diagnosis 64% other major illness. Treatment 76% receive regular G.P. 36% NHS hospital, &.10% private doctor.

In some areas some doctors still will not recognise the severity of M E. A doctor in Yorkshire who is on the assessment panel for DLA recently told us that working did people did not get M E - it was just an illness of the middle aged middle class women. Difficult. Most lab tests normal. No specific lab test. Diagnosis by clinical observation. Can easily be mistaken for depression by unconfident doctors. Our membership 9% Acute Onset 46% Chronic and 45% Improved still but ill.

Main problem Fatigue, one period of activity may take weeks to recover from. Like being drunk with a hangover or a bad dose of flu. Only treatment rest & pacing. Problems: no sleep, multiple neurological, pain allergies, & irritable bowel. Symptomatic. TCAD antidepressants work for pain control.

Analgesics 63%. Antidepressants 45% others drugs 28%
Mobility 53% limited to street ,& 34% locality.
48% No mobility aid 35% stick, & 20% use wheelchair.
65% need help with personal care sometime in illness.
78% can't work, 14% part time 6% full time (cases very dodgy).
49% rely on family or have no private income. 15% earn wages.
OLA (Mobility) 43% DLA (personal Care) 32% ICB & SDA 43%. 13% get no state benefits.

Care, as with other major illnesses is a lottery depending upon where you live. North Yorkshire education authority is excellent as they give home tuition and then allow the children to gradually go back into schooling. In Scarborough the secondary school supplies a quiet room for it's 4 M E children to study in away from the noise.

Only regional N.H.S. clinic in Leeds has a 150 long waiting list with a 52 week wait. (September 2001)
 

You write

Peter Writes: Why are you inviting alternative therapists to group meetings? We were told by our consultant not to bother with these people because they are a waste of money and there is no cure for M.E. anyway. You are wasting members’ money aren’t you ?
You are right that there is no cure for M.E. and the therapists will tell you that. What can be achieved by a therapist is to relieve symptoms, albeit for a short time, a few days or weeks, and listen to the patient. Personally I have knowledge of both Aromatherapy and Acupuncture both helping, and are used in certain other incurable cases by the NHS.

Jane Writes: Have you seen the warning on the internet about Kava??.
Ref.: http://www.intelihealth.com/IH/ihtIH/WSIHW000/333/8015/344965.html.
The website states :”Kava, is a plant of the Pacific islands. It is a traditional mood altering drink, used on ceremonial occasions. Over the last five years its popularity has increased in the US for alleviating anxiety and stress. Among herbal supplements, kava ranks ninth in sales with sales of more than $34 million PA. In asking for voluntary withdrawal, the British Medicines Control Agency is assessing emerging evidence over concerns of safety. It would be prudent for the public to stop taking any kava product.
Like the EEC, we are using the precautionary principle, a philosophy seldom followed by US regulatory agencies. Instead, the FDA has asked health professionals for help in determining if there is a problem. The FDA‘s hands are tied by the US regulations. Although widely used, Kava has never been subject to the rigorous scientific testing required before prescription and over-the-counter drugs can be sold. The dietary supplement law is written so that a product like this goes on the market. Pre-market approval is not required. Only if there is evidence of harm, can the FDA takes action. It does explain why we get a lot of junk ‘botanicals’ from the US.
And as Follow up….
I noticed a merchants were selling Kava in the internet, so I e-mailed one:
...Why are you selling this product while European Governments are banning its use. What safety information do you have?
A rather odd reply came back very quickly:
The safety information we have is 3000 years of use by millions of people without side effects. European Governments are protecting cash cows because they see the potential that kava might damage alcohol income. European Governments are not banning its use, they are banning the sale of kava because it threatens the sale of alcohol, which they already know causes liver damage…....
I wrote back :
I've heard this argument before, and quite honestly it doesn't hold water. All you're doing is trying to make a quick buck without caring about the way you make it….. You have not proof of safety with Kava. By continuing to promote it without the proper backup, you are leaving yourself wide open to the courts.
It was not long before a reply came back.
Calm down, you're getting steamed about something you just heard about. Don't try to start a crusade against something you know nothing about. If you must crusade try alcohol and tobacco and see how far you get. I could go on about the medical uses of kava, but you indicated you already know more about that than we. So we'll just stick to our quick buck schemes until the government says we can't !
Conclusion: Kava is best left to the Pacific Nationals for their traditional ceremonies !!!

Doncaster September 2001 Membership Survey.

Here is a summary of the results from the 56 entries returned. For clarity I have rounded the data. Some data sets will not add up to 100% because of rounding or multiple field entries. A similar survey took place in Leeds in 1998. Generally our figures are similar with one or two exceptions.

Average age of members: 45, (S.D. = 15).
Average time since Health Breakdown: 10 years (S.D. = 6.2).
Average time since Fatigue Diagnosis: 6 years (S.D. = 4.38).
S.D. = standard deviation, a standard statistical method for assessing the spread of data. This means that most of our members have been ill for 10 years, and had to wait 4 years for a diagnosis. The situation is getting worse as the 1997 survey shows a 2½ year wait for a diagnosis. The Leeds figures are about two years. Totally unacceptable!

Sex : Male 21% Female 79%:
Typical result following national trends.

Marital Status: Single 23%, Married 48.%, Divorced 20%, Widowed 4% Minor 2% & with Partner 2%.
These are roughly in line with the Leeds survey.

Diagnosis: C.F.S. 43%, F.M.S. 9%. M.E. 56%, P.V.F.S. 25%. Shows that CFS has not been universally accepted as a name for the illness.

Diagnosed by: Consultant 45%, G.P. 55%, Hospital Clinic 9%, M.E. Clinic 20%, Paediatrician 5%, Private Doctor 10%.
Most members see more than one doctor. The 20% with a diagnosis from a M.E. clinic is low compared to a similar survey in Leeds suggesting the need for a local M.E. clinic. In Leeds only half of the cases were diagnosed in the M.E. clinic.

Other Health Problems: Adrenal Dysfunction 2%, Allergies 4%, Arthritis 9%, Asthma 4%, Crohn's 2%, Depression 4%, Diabetes Type 2 2%, Eyesight 2%, Food Intolerance 2%, Gastric Reflux 2%, Hearing Impairment 2%, Hypertension 2%, Hypoglycaemia 2%, Lymph Nodes 2%, Migraine 2%, Muscle/Skeletal 2%, None 48%, Oestrogen Low 2%, Osteoporosis 4%, Sarcoidosis 2%, Scleroderma 2%, Thyroid (low) 15%, Thyroid (high) 2%, Ulcerative Colitis 2%,. N/a 6%.
Less than half have another major illness, and anyone suspected of M.E. should be screened for other illness, especially thyroid conditions.

State of Illness: Acute Onset 9%, Chronic 45%, Recovering 16%, Improving 25%, Rehabilitation 4%, Fully Recovered 2%.
Does show almost all of our members are ill.

Source of treatment: Alternative 9% ,G.P. (NHS) 77%, Homeopath 2%, Hospital 34%, M.E. Clinic (NHS) 5%, Private Doctor 29%, Therapist 16%,. N/a 4%.
Nearly 30% seeing a private doctor shows the NHS is not providing a proper service. This is low compared to feedback from the helpline. Also, only half those diagnosed by the Leeds clinic are being treated there; the other half are discharged to their G.P.

Type of treatment: Acupuncture 2%, Antifungals 4%, Antihypertensive 4%, Antiinflamatories 2%, ,Antispasmodics 2%, Aromatherapy 4%, B12 Injections 2%, Diet (Antifungal) 6% , Drugs (Analgesic) 61%, Drugs (Antidepressant) 45%, Drugs (Other) 27%, EPD 4%, Herbs 5%, Homeopathy 2%, Magnesium Injections 2%, Multivitamins/Minerals 15%, Osteopathy 2%, Reflexology 4%, Tens 4%, Thyroid 9%, No answer 1%.
Use of multivitamins lower than expected. Surprisingly more painkillers than antidepressants. 15% have a low thyroid, but only 9% are treated. May be a problem.

Mobility Limit: Bed 2%, Bedroom nil, Home 18%, Garden 14%, Street 13%, Locality 35%, Town 11%, Unlimited 7%.
About half, 44% are restricted to home.

Mobility Aids: None 54%, Car (Automatic) 7%, Car (Manual) 4%, Crutches 2%, Orange Badge 4%, Scooter 5%, Stick 32%, Wheelchair 18%.
About half need no mobility aid this corresponds to roughly the mobility limit data.

Personal Care Help: None 38%, Occasionally 25%, Sometimes 21%, Most Of The Time 5%, Always 11%.
National groups say 25% are severely disabled.

Work and Earn Money: Not At All 79%, A Few Hours 5%, Part Time 9%, Full Time 7%, With Overtime nil.
Most people cannot work, but a few can, and the reason why some don’t is that there may be in benefit traps. Compared to a similar survey in Leeds the figures are about the same.

Private Income: Business nil, Investments 2%, Member of Family 32%, Private Pension 5%, Wages 16%, Work Pension 30%, N/A. 21%.
Half the members are living with a partner, but only a third received financial support.

State Benefits: Attendance Allowance 2%, Council Tax Benefit 2%, DLA (Mobility) 38%, DLA (Personal Care) 27%, Incapacity Benefit 29%, Income Support 23%, Jobseekers 2%, None 18%, Severe Disablement Allowance 9%, State Retirement Pension 13%, Statutory Sick Pay 2%.
The Leeds survey gave 77% claiming Incapacity Benefit. This suggests that there are many members are not claiming benefits they are entitled or that they have been denied this benefit. The number claiming Council Tax Benefit is lower than expected.

The committee agreed that the information will be a valuable tool in our campaign for better services. As such it was agreed at a committee meeting that the survey will be repeated or ongoing. This will give the necessary feedback as to if things are getting better or worse.

At Last !!! The Chief Medical Officers Report on ME/CFS is Published.

Yes, at last, on the 11th January! Here is a short summary of this report.

Terms of reference.

To review management and practice in the field of ME/CFS with the aim of providing best practice guidance for professionals, patients, and carers. To improve the quality of care and treatment for people with ME/CFS In particular to:
Develop good clinical practice guidance on the healthcare management of ME/CFS for NHS professionals, using best available evidence.
Make recommendations for further research into the care and treatment of people with ME/CFS.
Identify areas which might require further work; make recommendations to the CMO.

The report contains nearly 150 pages divided into six chapters and seven annexes. In this guide we repeat the Key Messages and Recommendations in full, and quote selectively a number of extracts. Details of how to view the report in full will be displayed at www.afme.org.uk (Click the blue to transfer to AfME website).

Highlights of the Report.

1) Evidence on the extent of distress and disability on patients, carers, and families.
2) M.E.‘s often encounter a lack of understanding from healthcare professionals.
3) Inadequate awareness & understanding among health professionals & wider public.
4) Under-provision of treatment, with patchy inconsistent service delivery & planning.
5) A paucity of good research evidence and very little research investment.
6) Insufficient attention has been paid to children and young adults, the severely affected, cultural, ethnic and social class groupings.
7) Existing controversy should not be used as an excuse for inaction or unsuitable practice.
8) Those affected number over 100,000 possibly approaching 250,000.
9) No single cause. The report provides a balanced view of the known facts and theories.
10) The severity is recognised even for those most mildly affected. But the report highlights the special difficulties and invisibility of those most severely affected.
11) The report highlights difficulties experienced with benefits, employers and insurance.
12) Diagnostic criteria are established, with diagnosis expected within six months at the latest.
13) No management approach has been found universally beneficial, and none can be considered a cure. However, general principles can be outlined to guide management.
14) Most people with ME/CFS can expect some degree of improvement with time and treatment, so a positive attitude towards recovery needs always to be encouraged.
15) Each individual is best managed according to a unique flexible management plan, in which specific strategies and therapies are tailored to his or her particular circumstances.
16) All clinical interventions carry a potential risk of harm, especially if applied incorrectly; for ME/CFS in particular imposed, rigid programmes can be actively harmful.
17) A number of approaches are identified that may help in the absence of a cure. As expected, these include Cognative Behaviour Therapy and Graded Exercise, but for the first time Pacing is recognised as a useful approach.
18) Children’s needs highlighted. Robust recommendations for multidisciplinary approach.
19) Major recommendations for education, training, NHS services and research.
The Report's Recommendations

ME/CFS is a relatively common clinical condition, which can cause profound, often prolonged, illness and disability and can have a very substantial impact on the individual and the family. It affects an age groups, including children. The Working Group has encountered extensive evidence on the extent of distress and disability that this condition causes to patients, carers, and families. It has examined the evidence on the effectiveness of interventions used in the management of this condition. Patients and carers often encounter a lack of understanding from healthcare professionals. This lack seems to be associated with inadequate awareness and understanding of the illness among many health professionals and in the wider public. Many patients complain of the difficulty of obtaining a diagnosis in a timely manner.

There is evidence of under provision of treatment and care, with patchy and inconsistent service delivery and planning across the country. Finally, there is a paucity of good research evidence and very little research investment for a serious clinical problem that in all likelihood has a pervasive impact on the individual and the community. insufficient attention has been paid to differential outcomes and treatment responses in children and young adults, the severely affected, cultural, ethnic and social class groupings. Urgent measures have been identified that should be quickly implemented.

Recognition and Definition of the Illness.

The NHS and healthcare professionals should recognise ME/CFS as a chronic illness that affects people of an ages to varying degrees, in many cases substantially.
In view of current dissatisfaction among some groups over the nomenclature applied to this illness, we recommend that the terminology should be reviewed, in concert with other international work on this topic.

Treatment and Care.

Patients of an ages with ME/CFS must receive care and treatment commensurate with their health needs and the disability resulting from the illness
Healthcare professionals should have sufficient awareness, understanding, and knowledge of the illness to enable them to recognise, assess, manage and support the patient with ME/CFS Healthcare workers who feel they need extra skills should seek and receive help from those experienced in this area.
GPs should usually be able to manage most cases in the community setting, but must be able to refer patients for specialist opinion and advice where appropriate (e.g. because of complexity in diagnosis and treatment).
ME/CFS of any severity in a child or young person (defined as of school age) is best co-ordinated by an appropriate specialist: usually a paediatrician or sometimes a child psychiatrist, in concert with the GP and a paediatric or Child and Adolescent Mental Health Services (CAMHS) multi-disciplinary team.
Sufficient tertiary level specialists in ME/CFS should be available to advise and support colleagues in primary and secondary care.
Management should be undertaken as a partnership with the patient, and should be adapted to their needs & circumstances, and be applied flexibly, in the light of their clinical course.
The support of the patient management should extend to the patient's carers and family.
Clinicians must give appropriate and clear advice, based on best national guidance, on the nature and impact of the illness to those involved in providing or assessing the patient's employment, education at all levels, social care, housing, benefits, insurance & pensions.

Health service planning

Service networks should be established to support patients in the primary care and community setting, to access when necessary the skills, experience, and resources of secondary and tertiary centres, incorporating the principles of stepped care. Services should be configured so that individual professionals and aspects of the service can meet individual needs, particularly in the transition from childhood to adult life.
Health service commissioning through primary care organisations, supported by health authorities or wider consortia, must ensure that local provision for these patients is explicitly planned and properly resourced, and that health professionals are aware of the structure and locale of provision. Health commissioners should be requested to take immediate steps to identify the current level of service provision for patients locally.
Each Strategic Health Authority should make provision for secondary and tertiary care for people with ME/CFS, based on an estimated annual prevalence rate of approximately 4000 cases per million population in the absence of more refined data.
People who are so severely affected that their disability renders them house bound or bed bound have particular constraints in regard to their access to care. These specific needs must be met through appropriate domicillary services.
The NHS should make use of the wide range of support and resources available through partnership arrangements with voluntary agencies, enabling suitable self management by the patient.

Education and awareness.

The education and training of doctors, nurses, and other healthcare professionals should include ME/CFS, as an example of the wider impact of chronic illness on the patient, on carers and family, and on many aspects of society.
Healthcare professionals, especially in primary care and medical specialities, should receive postgraduate education and training so that they can contribute appropriately and effectively to the management of patients with ME/CFS of all ages.
GPs and medical specialists should consider ME/CFS as a differential diagnosis in appropriate patients, and should at least be able to offer initial basic guidance after diagnosing this condition.
Awareness and understanding of the illness needs to be increased among the general public, through schools, the media, and employers, agencies, and government departments.

Research

A programme of research on all aspects of ME/CFS is required. Government investment in research on ME/CFS should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science.

ln particular, research is urgently needed to:

Elucidate the Aetiology and pathogenesis; clarify its epidemiology and natural history.
Characterise its spectrum and/or subgroups (including age-related subgroups).
Assess a wide range of potential treatment including symptom control measures.
Define appropriate outcome measures for clinical and research purposes.
Investigate the effectiveness and cost effectiveness of different models of care.

The research programme should include a mix of commissioned or directed research alongside sufficient resource allocation for investigator generated studies on the condition.

We will use this report as a lever to campaign for better services in South Yorkshire.

You write

Janice Writes: I am very upset today after hearing a feature on the 1.00 p.m. news of 10th April 2002 on BBC1. They reported that the British Medical Journal (BMJ) had held a poll of doctors who are wanting to unload 147 illnesses they are expected to treat as "lifestyle illnesses". Top of the list C.F.S. (not even the decency to call it ME). They showed a woman who has had ME for 12 years, and she rather mildly stated that it is very upsetting to see CFS on the list as she is very debilitated with the illness. What is happening? How is Action for ME going to respond to this do you think???

Doctors were asked to describe problems patients complain about which they feel are not strictly medical conditions. They included: ME, Depression and Gulf War Syndrome with obesity, ageing, baldness, bad breath, big ears, and sexual dissatisfaction. Brian, the AfME Publicity Officer wrote and told us:
“Regarding the person that was on the item - I set up Theresa Coe (who is Editor of Interaction) with the BBC because it was very short notice and it is difficult to get a severely affected person at an hours notice - Theresa made some other very powerful comments and is excellent at conveying the seriousness of the illness.
We are very disappointed with the way in which the BMJ has gone about this. The poll does not prove that M.E. does not exist, nor does it suggest so. It also does not deny that it (amongst other conditions) is very distressing. It was simply the BMJ's rather crude (and unprofessional –ed.) attempt to find out from its readership which conditions should not be regarded as diseases. Diseases is a clinical term (which implies, amongst other things, that it is infectious), so is not always a perfect term. In that sense it could have been a worthwhile exercise.
However, given that it was done as a vote (each person was given 10 votes and was to number their choices 1 to 10), rather than a mature discussion, and also that M.E. was in the list along with such diverse "conditions" as big ears, boredom, work, osteoporosis, diabetes and depression, it was a crude, and we believe, pointless exercise which has merely succeeded in giving the wrong impression about all of these illnesses. M.E. remains an officially recognised condition, given the recent publication of the CMO's report. The BMJ does not affect this. M.E. was not, of course top of the list. We were quoted in the Guardian piece out the same day and we'll see if there's more follow up we can input to.”

We asked Theresa for her comments. She told the Pathways:
“I said all sorts of things they didn't use - like that ME and diabetes (also listed) could be potentially life threatening and that it was profoundly damaging to have them listed alongside trivial things like boredom. I also swore in the first take and they had to reshoot - so I tried to be very calm and come across unhysterical.”

Mike Stone, director of the Patients Association, said:
"If you turn around to someone who is infertile and say we shouldn't be treating you in the same way as other patients, I think they'd be pretty miffed about it."

The feature was not on any of the later news programmes that day. I think there was an outcry and the BBC spiked the story. -Mike

Denise writes: I thought I would write to you having read "A success story in M.E. management". I too have a success story to tell.

Approximately eight years ago, my son Darren, then aged twenty-one, developed M.E. Darren had been a straight "A" student, he was in his second year at Cambridge University. He had been ill for some time, even years, but would not admit to it. His health had deteriorated to such an extent that we had to bring him home, he was later diagnosed as having M.E. and to some degree it was a relief to him. At his worst, he could not walk for more than a minute or two, he could not read more than a few lines of a book without forgetting the story. He could not watch the television because he forget the plot, he could not even hold a conversation, because he had forgotten what he was talking about, and worst of all, he developed a reverse sleep pattern, awake all night and sleeping through the day. He became a very sad, lonely and depressed person, he lost all his vitality and confidence, it was heart breaking to see him like that and feel so helpless.

But help was at hand! I was given the phone of number you Mike, at Medals, and through you I was able to make contact with LIz McDonagh who was marvellous with helping Darren with his diet, a candida detox diet, yeast and sugar free, this was hard for a young man, no beer and no sweet things. It was hard but he persevered, and I became an expert at making unleavened bread and reading food packaging labels. Another contact was Dr. Swinburne, she was brilliant in giving support and guidance about mineral supplements etc. As a past M.E. sufferer, her advice was invaluable for several years. A third contact was DIAL, their help too was also invaluable, they visited Darren at home and helped him to fill in forms, which led him to qualify for D.L.A. and ultimately the orange (as was then) disabled car parking sticker and free road tax for his car, when well enough to drive, his car became "his legs".

A senior colleague of mine, a qualified hypnotherapist, played a valuable part, helping Darren, which eventually cured his sleeping problems. He also became a valued friend and confidante to Darren. At the beginning of his illness I read about Cognitive Therapy treatment, and we both liked this approach, but the treatment was private and in London. Darren was also far to ill to travel. After 3½ years at home, making gradual progress, Darren felt well enough to give it a try, it was still in London, but was now available on the N.H.S. This marked the beginning of the end, it changed his lifestyle, gave him back his strength, but most importantly of all, his confidence.

Darren had the illness for five years, but I believe it has made him a better person, more sympathetic to the needs and frailties of others. Three and a half years ago Darren returned to university, this time to Brunel, last summer he gained a first class Honours degree as an Industrial Design Engineer, he also won two awards, for outstanding achievement in final year exams (he came top) and the university medal.

He is now living and working in London, he still gets tired, but is now able to manage that, and lives a full and happy life. Darren's own strength of character and determination to get better, played a large part in his long recovery and his family are very, very, proud of him. Darren was young and was lucky to receive a lot of emotional and financial support from his family and friends, but the combined help and support from Medals, Liz McDonagh, Dr. Swinburne, Hypnotherapy and Cognitive Therapy all played a tremendous and vital part in his recovery. I hope his story will give hope and inspiration to other sufferers, especially young people.

The Leeds Disability Benefits Centre.

For the April meeting, were visited by Sandra Lavery Customer

What do you work for? The Regional Disability Benefit Centre (DBCs) in Leeds, one of 11 in the UK.

What do you do? We deal with all new (initial) claims of Disability Living Allowance (DLA) and Attendance Allowance (AA) for the first 3 months of a claim or, until the claim is finalised, whichever is later. This will include any maintenance work, e.g. change of address, hospitalisation, and any disputes process e.g. reconsideration, appeal.

What happens after 3 months? A case will be dealt with/owned by the Disability Benefits Unit (DBU) at Blackpool, who deal with the whole of the U.K. The DBU will deal with any subsequent maintenance work on the case, renewal claims and disputes.

What is DLA? It is a tax-free, non-contributory and non-means tested benefit. DLA is available to those aged between 3 months and to the day before the 65th birthday. The customer must also satisfy certain residence and presence conditions. A customer must have had the needs for 3 months (qualifying period) and expect them to last for another 6 months (prospective test). There are 2 components of DLA care and mobility.
Care component is for people who need help with personal care. There are three rates based on the amount of care the individual needs:
Lower rate is for people who need help during a significant part of the day; or if over age 16, who need help to prepare a cooked main meal for themself; and for children aged under 16, the care needs must be substantially in excess of those normally required by children of the same age.
Middle rate is for people who need frequent help during the day; or need prolonged or repeated help during the night; and for children aged under 16. The care needs must be substantially in excess of those normally required by children of the same age.
Higher rate is for those who satisfy one of the middle rate day conditions and one of the middle rate night conditions.
Mobility component is for people aged 3 years or over. There are two rates:
Lower rate is for people who cannot walk outside on unfamiliar routes without someone to guide or supervise them for most of the time. For children aged under 16, the guidance and supervision must be substantially in excess of that normally required by children of the same age.
Higher rate is for people who are virtually unable to walk or have both legs amputated at or above the ankle or were born without legs or feet or are both deaf and blind or are severely mentally impaired with severe behavioural problems and have entitlement to higher rate care component or are unable to walk. People who qualify for the higher rate of the mobility component can also apply for exemption from road tax, and a Blue Badge from Social Services. If the award is for 3 years or more they can also apply for assistance in purchasing a car under the Motability Scheme.

What is Attendance Allowance? It is a tax-free, non-contributory and a non-means tested Benefit. AA is available to those aged 65 or over. The customer must also satisfy certain residence and presence conditions. A customer must have had the needs for at least 6 months (qualifying period). There are two rates of AA based on the amount of care the individual needs:
Lower rate - for people who satisfy either the day or the night condition.
Higher rate - for people who satisfy both the day and night conditions.
The Day condition. The need for frequent attention throughout the day in connection with bodily functions, or continual supervision throughout the day in order to avoid substantial danger to themselves or others.
The Night condition. The need for prolonged or repeated attention during the night in connection with bodily functions, or someone awake watching over them at frequent intervals or for a prolonged period during the night in order to avoid substantial danger to themselves or others.

Are there any ways of fast tracking the Applications for DLA or AA? Yes, there are Special Rules which apply to people who have been diagnosed as terminally ill, who have an illness that is likely to limit life expectancy to six months or less. Under these people do not have to satisfy the 6 months qualifying period and will qualify for the higher rates of AA or DLA automatically.

What happens if your decision is disputed? When a customer has received the decision notice they can request a verbal or written explanation, which may help them to understand how the decision was established. However, if the customer is still unhappy with the initial decision they have 1 month from the date of the initial award notice to request a reconsideration. This time allowance is extended by 2 weeks if the customer requests a 'written statement of reasons' within the 1 month period. If the customer requests a reconsideration and is unhappy with the subsequent decision, they have 1 month from the date of the reconsideration notice to request an appeal. A customer can request an appeal without requesting a reconsideration first, and the Appeal Writer will cerebrally reconsider the decision before writing the appeal submission. If the Appeal Writer considers that the initial decision was incorrect and should be revised in the customer's favour, they will do so rather than submit the appeal.

What happens if someone is dissatisfied with the decision? The case is then taken out of our hands to the Independent Tribunal Appeals Unit.

Are there any quotas or any restrictions on the number of awards you can make?
No. There are no quotas targets or as such we have to adhere to. All that is important is
that we reach the right decision.

What arrangements are in place for quality control? Firstly there is staff training, Peer Review and Job performance evaluation.

Do you have any useful contact numbers? Yes here they are:
Claim Pack Requests (0113) 2309229 and (0113) 2309041.
Forms Completion Service (0113) 2309105.

What about contacting yourselves?
Here are our telephone numbers:
Sandra Lavery, Customer Relations Manager (0113) 2309028.
John Emsley, Customer Support Manager (0113) 2309179.

Do you have a complaints department?
You can contact, Elspeth Bottone Customer Complaints Manager on (0113) 2309015.
These are the basic building blocks of the brain. How they are wired together and how different nerves cells respond is a complex area, and not fully understood. However the above mechanism fundamental (with many variations) to all nerve cell types.


Warnings from the Medicines Control Agency.

Use of Traditional, Chinese Medicines and Herbal Remedies.

The MCA continues to receive information relating to the supply of
Traditional Chinese Medicines containing prohibited ingredients. For example, reports have been received of Traditional Chinese Medicines containing the banned herb aristolochia, which can cause renal impairment and urothelial cancer. The MCA also receives reports of herbal remedies and Traditional Chinese Medicines containing prescription only medicines such as corticosteroids, glibenclamide and fenfluramine. The MCA has recently become aware of a traditional ethnic medicine from Ghana called Wall Wa cream containing the corticosteroid clobetasol propionate. These combinations are illegal and potentially very harmful, as the patient may not be aware of the added ingredient. Healthcare professionals have been reminded to ask patients about their use of herbal remedies and Traditional Chinese Medicines before prescribing a new medicine, and particularly when investigating possible adverse reactions.

Kava-kava and Liver Damage: Use suspended pending further investigation.

The herbal remedy Kava-kava is derived from the plant Piper methysticum; Kava-kava has rapidly increased in popularity in the UK as a herbal remedy for the treatment of nervous states such as anxiety, tension and restlessness, and also for symptomatic short term relief of bladder discomfort and discomfort in the upper abdomen following meals. There have been 27 cases of liver damage reported from Germany and Switzerland suspected to be due to the use of herbal products containing Kava-kava. There has been one report of abnormal hepatic function associated with the use of Kava-kava in the UK. Onset of the hepatic reactions ranged from 2 weeks to 2 years. The adverse reactions ranged in severity from abnormal liver function tests to liver failure. Of the 6 patients with liver failure, one died and five required liver transplants. As a precautionary measure, Kava-kava containing products have been temporarily removed from sale pending further investigation of toxicity reports.

It goes without saying: Avoid Kava at all costs.


TREATMENT FOR CFS/ME OR
HOW I GOT SICK AND TIRED OF BEING SICK AND TIRED !

Clara is a professor of Counselling (and other subjects) in the nursing departments of two universities: Barcelona University and Girona University. She also teaches doctors, psychologists and nurses in Continuous Education for the Ministry of Health of Catalonia. She writes manuals and articles on Counselling (in Spanish). The text may seem strange as English is not her first language. I have decided to leave her account as received at face value with minimum editorial intervention. – Mike

After 18 years of having CFS, I have found a clinic where I have had my health problems looked at very thoroughly and where I am getting treatments which are beginning to give me my health back. As those of you with whom I have had contact with know, I have been, over the past few years, researching thoroughly all that is being done in CFS treatments. I have been in contact with researchers and clinicians and, having contrasted the approaches and ideas, I have found most of it quite discouraging.

In CFS we have gone from, a few years ago, having doctors tell us that it was all in our heads to them saying that, yes, we have something, most likely immunological, but that we should wait and see and learn to adapt with a bit of Cognitive Behavioural Therapy. If any medication has been offered to us, it has been antidepressants (which do not deal with the problem), non-steroid anti-inflammatory drugs or cortisone (both which deal only with symptoms, and not very adequately, and which cause other problems). We are being told to think positive thoughts and wait for the cure (it is very unscientific to think that a syndrome, which implies multiple causes and manifestations, would have one cure) while not telling us (perhaps many doctors do not know this) that if a faulty immune system is left to wait, the person will develop more serious health problems. So from being see as nut cases we are now, thousands of us, being parked with the wait advice. I am all for learning to live with what cannot be changed (after all, I am a Counselling professor besides being a nurse), but it would be crazy to do that having the knowledge that the more time that an immune problem is left, there are more possibilities of developing other problems. Not to mention wanting to put an end to the dismal quality of life that we live with.

To me, the priority was to find out, in detail, what exactly was wrong with my immune system. The tests that I had done up to this year (with a leading Spanish CFS expert who has followed me over the past 8 years), showed that I had a major CMV (1) infection and that the antinuclear antibodies (ANA) (2) were altered. My symptoms added to determine the CFS diagnosis: constant throat infections (two a month), flu-like symptoms everyday, joint problems, dizziness, major fatigue, a lot of physical suffering, a dismal quality of life and the rest of what all of you know too well.

As some of you know, research shows that in most people with CFS, a part of the immune system called the TH1 (3) response is not working well or much. This is the part that is responsible for killing off viruses and neoplastic cells (there are excellent explanations of the relationship between CFS and the TH1 response on the net by the American doctor Paul Cheney). I found a clinic in Cologne, Germany, called the Medical Centre Cologne (MCC) and the International Institute for Onocological and Immunological Research, which does very thorough immunological testing. (Did you know that for many immunological tests, they have to be done within the first 3 hours after drawing the blood?). Depending on the test results, they are able to do treatment. The International Institute conducts observational studies in the field of Oncology and immunology. They evaluate the clinical outcome of new and novel therapies which have been applied.

My test results showed appalling deficiencies in the TH1 response of my CD4 (4) positive lymphocytes (for instance, my number of natural killer cells, NK, (5) were at 3%) and major alterations in the flora in my large intestine (did you know that 80% of the immune system is in the gastro-intestinal tract?). Having read some immunology, I knew that this was a serious situation and I started treatment right away at the MCC (6). Besides wanting to avoid more serious health problems, I desperately wanted relief from how badly I felt and to get some sort of life back. I had previously informed myself and I knew that the International Institute for Oncological and Immunological Research was run by Profesor Dr. Robert Gorter, a leading immunologist and professor of Immunology and Internal Medicine at the University of California at San Francisco (one of the two leading medical schools in the world along with Harvard), as well as in other universities, with many years experience in treating immune problems and with a brilliant curriculum.

In week-long trips to Cologne, I started the main part of the treatment which consists of hyperthermia (6) sessions (provoking a fever under medically controlled conditions). This is an intervention designed to rebalance the immune system (the unbalance between the TH1 and the TH2 response of the CD4 positive lymphocytes) and it is used for numerous immunological problems as well as for neoplastic disease.

For more details of the treatments offered in Cologne, see the home page www.koelner-modell.de In between trips to Cologne (7) , I am doing the part of the treatment that consists of taking capsules and doing sub-cutaneous injections. I have looked into all these treatments and they do not entail any risks or side effects. The worst that could happen is that the patient does not improve as much as he or she would like.

In my case, just after the first hyperthermia treatment, most of my symptoms have gone. Gone are the infections, the muscle pain, the flu-like symptoms and the rest of it. It is a relief not to be suffering all the time. I am half-way of what will probably be 4 trips to Cologne and I am looking forward to regaining more energy and making sure that the immune system is in better shape by the end of it.

The cost of testing and treatment at the Institute is less than what is being charged by other immunologists for treatments which, frankly, worry me because they consist of stimulating the immune system. This could be risky or useless because if you stimulate a system that is already out of whack, it could easily increase the dysfunction. At the Institute in Cologne, they don't make promises. If after thorough testing they see that they cannot improve your particular problem, they will tell you so. The fact that I don't speak German has not been a problem in getting treatment in Cologne. At the MCC, there are staff members (including Profesor Gorter) who speak English and someone who speaks French. Other languages spoken there are Dutch and Flemish.

As a person who has lived with CFS and as an activist in the CFS networks, I wanted to share this information with you because I am sick and tired of seeing so many people suffering needlessly. It also worries me that we have become so accepting of the wait-and-see-take-antidepressants-do-CBT-have-positive-thoughts-and-rest line that the doctors have been feeding us .- Clara Valverde, Barcelona, Spain.

I passed a copy of the eature to Carolyn for comment. She wrote:

It makes interesting reading, BUT from a group reading point of view: It is-

a) Difficult for the layperson to decipher because of all the medical jargon. Would people know what CMV infection is or, about their antinuclear antibodies (ANA) for instance? Her tests results....TH1 response of her CD4 etc etc...........

1) CMV Cytomegalovirus, A herpes like virus that could persist and be reactivated in later life. It is treatable with anti-viral drugs.
2) ANA Anti nuclear antibody. A protein produced by the immune system directed against one’s own cell nuclei. It is an auto antibody similar to those produced in rheumatic disease. Its presence in large quantities indicate a disease called Systemic Lupus Erythematosus, but in M.E. the levels found are low and the clinical significance is not fully understood.
3) TH1. This is an operational signalling mode of the immune system of the T1 helper cells. This is abnormal in M.E. and Gulf War Syndrome.
4) CD4 is a part of the T cell sub set of the immune system can be thought of as helper or inducer cells. These can be thought of as the watchdogs to alert the immune system. These are hit by the AIDs Virus. In many M.E. cases there is a mild abnormality whereby they continue to signal activation e.g. the watchdogs continue to bark.
5) NK. Natural Killer Cells. Part of the immune defence system that attacks anything in the body it sees at foreign e.g. bacteria or damaged cells.
6) Hyperthermia. A means of inducing fever,. or raising body temperature; part of the strategy used by the body to fight an infection. In many M.E.‘s the normal body temperature is low. Raising the body temperature by e.g. Hot bath or drugs like thyroxin does give a short term remission. ME's seem to do well in warm weather, but seem to become more ill as the weather cools. This results in a deluge of calls to the group helpline at the end of September.
7) Koelner Modell Cologne. A Research Clinic/ Hospital in Cologne. They have a website in English. They seem to work holistically. As to wheather they are better or worse than the U.K. clinics I cannot tell. They appear to be private and expensive.

b) Is there any evidence for her theories?

Yes, but these are research based, and any treatment strategy resulting from this research needs clinical trials to establish issues, how effective and safe they are.

c) How many ME/CFS patients has this clinic helped considerably???????

I don’t think you would get that sort of information very easily, even here in the U.K.

d) Has she directed any of her own personal experience towards AfME or ME Association. or, any clinics concerned with research over here?

I think this is point of her letter. She circulated this freely on the Internet.

I could go on but I won't except to say if anyone fancies funding a guinea-pig from uk to give it a try..............put me top of the list:!!!! Carolyn.

I’ll write back to Clara and report how things are going in the next Pathways-Mike.


A Debate On Proposed EEC Changes to Medicines Regulation:

Dr. Myhill has asked us to include the following in our newsletter.

The EU is about to ban a wide range of vitamins, minerals, essential fatty acids, herbal preparations, etc. They propose giving the Medicine Control Agency the powers to ban, if they chose, EPD and mineral water. I am writing to inform you about a new European directive which means that you will be unable to purchase vitamins, minerals and herbal remedies. This is akin to the vitamin B6 fiasco which, happily, was squashed.

This new directive doesn’t just apply to one vitamin but every vitamin, mineral, food supplement and herbal preparation that you can think of. Effectively they will be banned, only available on doctors prescription and even then at a much greater cost. I see this as a result of pressure from the pharmaceutical companies to get rid of these extremely useful supplements which prevent these companies from cashing in. For further information, please look at the Consumers for Health Choice website on www.healthchoice.org.uk. There is also a new but competent organisation set up called the Alliance for Natural Health which has just to develop a website, but please look out for them.

The three initiatives currently at various stages of development in Brussels include:-

1) The Food Supplements Directive

This will impose Napoleonic Law on Nutritional supplements in the form of a (very restrictive) positive list which will be the only formulations allowed, plus as yet undetermined maximum dose levels which are likely to make effective supplementation impossible. Other products can only be included on the list after submission of (prohibitively expensive) detailed documentation by manufacturers. This directive has now been finalised by the EU and this month becomes EU law.

It is quite clear that some ‘food supplements’’ are really effective drugs and are incorrectly classified as such food supplements. Two that come to mind are DHEA (causes masculinisation) and Melatonin (causes depression). It surely cannot remain in the public interest that these are left not unregulated as at present?

2) The Traditional Herbal Medicinal Products Directive

This will make illegal any use of any herbal product that has not been in use for 30 years including 15 in the EU. Gingko Biloba and Artemisia Annua are just two that will become unobtainable. Blends of herbs with vitamins and minerals would be classed as medicines requiring a full medical licence. (This is the case now under the 1968 Medicines Act. A herbal product may only be legally sold at a single ingredient product).

The problem is that medicines in order to obtain a product licence have to undergo rigorous testing. This included safety issues (remember thalidomide ?) and wheather it is effective. These are usually done as double blind trials. Herbal products by there nature and the way they are prescribed and used cannot be rigorously tested in the same way. Most of the herbal safety information is only based on ‘lack of adverse reports’ which is not really reliable. There is a second issue some traditional Chinese herbal medicines a cause significant number of deaths every year. Despite certain ingredients being illegal and banned. e.g. Aristolochia. Remember Kava ? (See Pathways no. 45). Its use has been effectively banned by the Medicines Control Agency.

3) Proposed Amendments to the Medicines Directive

This will enable the MCA, and comparable bodies in other member states, to define as a medicinal product, and therefore to regulate the use of, absolutely anything intended to “restore, correct or modify physiological function”. In theory this could include mineral water, but is certainly likely to be extended to neutralisation and desensitisation vaccines (such as EPD), homeopathic preparations, acupuncture etc.

This already exists in U.K. law at present under the 1968 Medicines Act. Doctors may prepare or have made medicines for their patients. Products like EPD are unlicensed medical products in the sense that they do not have a product licence. They however are ‘authorised’ in the sense that they are recognised in law, and certain restrictions apply, e.g. they cannot be advertised and strict records must be kept on a named patient basis. On the subject of E.P.D., this technique has been ongoing for some thirty years now, and surely must have come of age. Should this be made a licensed product, then it would possibly be more readily accepted by the NHS and consequently be available in their clinics and free to all us who have to pay privately!

There is an umbrella organisation being set up – the Health Freedom Movement which will probably become the first point of contact for this campaign, so look out for them. Please write to your MEP urging him or her to vote against these proposals currently in the European Parliament. Virtually all the vitamins, minerals, EFAs, herbals, EPD that I use to treat patients will be lost. I will only be able to prescribe them and then it will be at much greater cost. Use your own words and experience. Encourage others to write. This proposal must be stopped.

I can’t really agree with that this statement. Modified, possibly. Certainly some people are going to be inconvenienced, and some may lose money. But at the end of the day, it’s all about safety, quality and efficacy. Here is a plug for the Medicines Control Agency and Committee for the Safety of Medicines from their website:-

The MCA and CSM work to protect public health by regulating medicines. This is achieved by ensuring licences are only granted to medicines with demonstrated safety, quality and efficacy. Marketed medicines are continually monitored for changes in their risks or benefits. If these change, licences are updated to reflect the new information. The MCA and CSM use various information sources to monitor the safety of medicines, including:
Spontaneously reported suspected adverse drug reactions (ADRs) from the UK (the Yellow Card Scheme) and abroad; these are held on the ADROIT database .
Clinical trials and safety of marketed medicines (SAMM) studies.
Epidemiological studies and surveys, disease and mortality registries.
Regular safety updates supplied by pharmaceutical companies.
Information from other regulatory authorities.
Published literature.

I will publish any letter etc to continue the debate –Mike.




After the feature by Clara Valverde in Spain in the last Pathways there were a number of questions raised in subsequent meetings. I raised these issues with Clara in a e-mail dialogue that follows:

Clara: Hi Mike, it was nice to see my text in your newsletter...but...English IS my first language...except that it is Canadian English...so maybe not up to par...
I just got back from finishing my treatment in Cologne. No, it is not expensive considering that in 5 weeks during this year I have got my health and my life back. I feel great: lots of calm energy, no pain, no infections and my blood test show that my NK cells are pretty much normal and my CD count is almost normal. Quite a big change. Lots of CFS folks are going to Cologne and this summer we were able to compare notes between Brits and Spaniards. Yes, they are even going from the UK. It's all the same story: every one has undiagnosed or untreated infections and a faulty immune system. It is great to see people get better, finally. I will write something in a couple of weeks for your newsletter.

Mike: I of course had made an assumption that you are Spanish. I think what's on everyone's mind is how much does the treatment cost? You might want to think of it in terms of 'Hotel/Bed' charges and treatment given. The trouble is we have the National Health Service (NHS), and unless there is a provable, Clear, cost effective treatment. they will not take it up.
With ME/CFS no one here seems to be about to 'measure' how bad ithe illness is. That's the first stage the NHS would need to ppprogress the situation.

Clara: It could all be done for under 6000 euros, trips included. More or less. About how to measure CFS: see what infections are present, their strength, the immune function, etc. For me it is worth the investment. I only have this one life.

Mike: To put things into perspective. Euro 6000 translates to around £4000. That is about the total annual income of most of the people unable to work in the UK supported by the State Welfare System.

Clara: People in Spain who get any pension get £2000 pounds a year, yet they are borrowing money from family, friends, enemies and banks to be able to get reatment and perhaps...get back to work? I know, life is full of hard choices.

The Web page of the Cologne Clinic is: www.koelner-modell.de.

People can get more information from Dr. Gorter's:
email : robert.gorter@gmx.de

Abstract of a letter from the Chief Executive of Action for M.E.

Dear Member,

In the next few months the Medical Research Council (MRC) will be issuing its recommendations for advancing research into M.E. At the invitation of the MRC we put forward our own proposals, following a consultation survey with a large sample of our membership. We anticipate much discussion on the MRC recommendations and media interest, and we wish our membership to be informed about our own position. For those with internet access, our full response to the MRC and the details of our membership consultation are displayed on our website at www.afme.org.uk

One of our core values as a charity is to listen and reflect the views of our membership, ensuring that the patient voice is heard both when developing and delivering health policy. To this extent I am pleased to explain how the results of our survey have informed our policy. Our official research priorities are outlined below. Their order reflects the relative importance attached to them by members in the survey, with at least 50% of responses rating these areas as 'important' to some degree:
1. The aetiology (cause) and pathogenesis (disease process) of M.E.
2. Identification of a diagnostic test
3. Remedying gaps in knowledge about disadvantaged and isolated groups
4. Clarification of the epidemiology (prevalence and scale) and natural history of the illness
5. In the absence of a cure, improving management strategies and addressing concerns repeatedly raised by patients
6. Social and economic research

While this member consultation exercise has given us the basis from which to advance the patient voice, we will seek to do so in a responsible manner. We have said in the past that one reason why so little research has been carried out has been the manner in which debates and disagreements have been conducted. There is no point putting money into M.E. research unless high-calibre scientists see the field as serious and safe to work in. There has been, for too long, a sense of 'them and us' about M.E. - patients pitted against professionals.

Now that we are on the verge of a proper programme of research being conducted, it's essential that we engage positively and constructively, to ensure that the patient voice is always listened to. Our role, therefore, will be to responsibly and assertively put forward the views and interests of people with M.E., particularly supporting studies that meet the above priorities. We will not ask for specific areas, such as psychiatry, to be prevented from participating. Instead, we will seek to judge each proposal on its individual merits, focusing on its benefit for the patient group, rather than ideological dogma.

Our aim in changing the culture is to ensure that people with M.E. get access to the kind of treatment that would be considered standard for other serious illnesses - and that professionals feel able to deliver this. Action for M.E. exists to improve the lives of people with M.E. and supporting high quality research is one of the key ways we can help make this happen. Please feel free to respond to this letter. Although I will be unable to enter into personal correspondence, I will certainly read and take note of all responses received. Thank you once again for your continued support of Action for M.E.

Chris Clarke.
 

Can there be a Family Risk factor for M.E?

For me the answer definitely is yes. I can think of three members who have a parent and a child with M.E. and a brother and sister who both have M.E. My attention was recently raised by a member who had a relative whose history follows. The case occurred around the 1950’s and bears many of the hallmarks and frustrations of undiagnosed M.E.

Bill was born in 1901. Like most of his family in the South Yorkshire Coalfield, he started working in the local mines after leaving school. He married, had a family, and was in normal health except for the odd minor accident that was common in the mining industry at that time. Bill’s problems started on 6th, January 1949, when he was hit on the head by a large lump of stone. He was not unconscious, but was off work for several weeks because of pain in his neck. On the 17th, February, 1949, he was crushed by a fall of stone receiving blows on head, back and shoulders and was practically buried but not unconscious, but collapsed after being rescued. He felt very weak but managed with assistance to walk to his home. Later he developed pain in his back and shoulders, weakness of arms and general itching and shooting pains in perineum. He was seen at a local hospital on May 3rd, and on September 27th was sent into a rehabilitation hospital, where he remained an inpatient for 6 weeks.

On the 15th February 1950 he was not well, and was sent by his union to see a doctor in an attempt to claim compensation. Bill had pains in his left arm and chest. His arms and legs felt weak. Repeated shooting pains in perineum, and pins and needles in the feet. He had a dislike of noise and crowds was is easily irritated. He also suffered from numbness of the lower limbs and complained that he feels generally weak. He also complains of a fluttering sensation under his skin in various parts. He stated that his symptoms got worse if he did any heavy exertion. All movements of the limbs and spine were mobile and movements were painless. His opinion was:
“In my opinion this man is not suffering from any disablement that can be demonstrated. On the other hand, I am convinced that this man has sustained severe shock to his nervous system and the present complaints are a manifestation of this mental upset. I would advise therefore, that he should be seen by a psychiatrist, as I feel that otherwise this man may never return to his pre-accident work“.

Bill was given light surface work and managed that successfully. On the 20th March he was sent to see a Psychiatrist. The report stated:
“He does not get depressed and that his memory and concentration are quite good. There are no abnormal physical findings. Mentally he is alert and cooperative and seems a quite good type. His complaints, are clearly , psychogenic in origin, and, due largely to loos of confidence in himself. From the history it seems clear that these symptoms developed as a direct result of the emotional disturbance associated with the accidents, and must, in my opinion, be regarded as directly due to the accidents. I would say that the disability is about 20%. Further improvement may be expected as he regains his confidence. I am not prepared, at the moment, to say whether there will be any permanent disability or not”.

Before his accidents Bill weighed 11st. 7lb, six months later his weight had fallen to 10st 7lb and twelve months later to months 10st 2 lb. From then on Bill had a history of many accidents when he worked underground spending much time off work. Towards the end of his mining career he was carried along by his workmates until his retirement.

Bill died in 1986 from the chest problems that are a hazard to miners. Right until the end he was frustrated and convinced that the accidents had dramatically changed his life. Looking back suggests that his history is similar to at least two members of our group. He had a normal life before; the accident being the trigger. Then there was a rise in symptoms as many experience in M.E. There was disbelief, and he was never the same after. His daughter had signs of M.E., and there is no doubt that his grandson definitely has.
Cartoon by Martin Arber
 

Flu vaccination: Safety issues for people with ME

Firstly, if you have a Carer or are dependent on someone to look after you, it would be prudent for them to have a flu vaccination. I hear comments like ‘It made me ill for a month after last time’, particularly from the older end of the population. My answer to that is that the vaccination is basically dead, or parts of dead virus given to alert your immune system to the threat. If you are suffering badly with dead virus, just think what would happen if you were infected with a live virus.

However the case is not so clear for M.E. sufferers as there are many factors to be balanced up. Really the best person to help you do this is your doctor. I am not aware of any hard evidence about flu vaccines with M.E. sufferers. However the points are as follows:

For
a) It will provide a high degree of protection against those strains of flu likely to be around this winter.
b) Flu vaccination reduces the chances of catching flu by about 70% for a year.
c) A bout of flu will almost certainly cause a relapse or worsening of M.E. symptoms.
d) If you have other serious health problems e.g. lungs, chest, heart, kidney disease, diabetes, or are taking steroids, or have a compromised immune system, you are at risk of developing serious complications.
e) If you have already been vaccinated against flu while having M.E. and not had any problems then the chances are that it should be OK.
f) Some people with M.E. when given an immune system challenge like a vaccination experience a remission. This can also occur with things like bee stings.

Against
a) Experience suggests that some people will suffer a relapse of symptoms. From experiences of our members I would say about two thirds will relapse.
b) Some people with M.E. have a definite over activated immune system. It is accepted medical practice not to give vaccinations to anyone who is suffering from an infection or with a activated immune system, as it may produce a potentially serious or life threatening adverse reaction.
c) Some people by the nature of an activated immune system are given a little extra protection because of having M.E.
d) It is not possible to predict who will react adversely, and in what way, to any vaccination.
e) In certain cases of AIDs there is a theoretical risk that a vaccination will increase the levels of HIV virus. This could also occur if other infections are present.
f) In event of a flu epidemic there are other drugs which can give a degree of protection e.g. Amantidine, but there are side effects.
 

Recent Panorama Broadcast About Seroxat.

The programme featured a case in the U.S.A. where an otherwise apparently stable family man killed all his family after taking two Seroxat tablets. He is taking legal action against the manufacturers. What has emerged is that a lot of data about adverse effects of the drugs have been withheld from the public and medical profession by the manufacturers. Prior to the Panorama programme the medicines control agency put information on their website www.mca.gov.uk, about the issue, and this is worth checking out if you are on the internet.

The issues concerning our members are as follows:

1) If you already are already taking Seroxat do not stop taking them or change your dosage without agreement from your doctor. If you are experiencing any odd effects contact your doctor as soon as possible.

2) There are issues around using SSRI drugs like Seroxat to treat ME. In the data sheet on Seroxat it states that it can be used to treat fatigue. I’m not so sure that this applies to M.E. and it may be misleading some doctors. I know of at least one doctor who is convinced that SSRI’s don’t work for M.E. and only prescribes TCAD’s for her patients. Certainly some research projects suggest that the SSRI Prozac does not work for M.E. Conversely a number of members are quite convinced that the SSRI Lustral works for them. The Leeds Fatigue Clinic is using one of the lesser know SSRI’s on some long term and difficult patients. Also some people with M.E. have co-existent depression and need to continue to take such drugs otherwise the problems they control may reoccur on withdrawal.

3) All medicines have risks of side effects in people and are double-edged swords. This applies to herbs and things like traditional Chinese medicines. I realise that the case quoted in the Panorama feature are extreme, but it has to be put into perspective. The betting odds of being harmed while crossing the road are about 1 in 100,000. This is about the same level as most prescription drugs. Many people have been helped by Seroxat. However, I know of several of our members who were prescribed Seroxat and suffered the fully blown side effects after taking one dose.

4) If anyone wishes to ring me about this issue I can be contacted on the group helpline (01302) 787353.

Fish oil 'Could fight M. E.’ or
Choline Levels are Correlate with Chronic Fatigue Syndrome

There was a feature on the BBC News 'Brain Chemical Imbalance may cause M.E.' in October. The findings are based on scans of C.F.S. patients. M.E. may be caused by a chemical imbalance in the brain, according to doctors. They have also suggested that taking certain fish oil supplements may help to alleviate some of the symptoms associated with the condition. Dr Basant Puri and colleagues at Hammersmith Hospital in London used state-of-the-art scanning technology to assess chemical activity in the brain. They examined a group of eight people who had been diagnosed with the syndrome and the same number of healthy people.

They found higher levels of two key chemicals - choline and creatine - in the brains of people with the condition. Choline is important for controlling fat levels in brain cells, while creatine provides energy. The doctors said the findings suggested CFS patients had abnormal phospholipid metabolism. Phospholipids are special types of fats which are an essential component of cells. They are protected by certain types of fatty acids. Doctors at Hammersmith believe fatty acid supplements could help to restore the chemical imbalance in the brain and alleviate the symptoms of CFS. However, the supplements need to have high Eicosapentaenoic acid or EPA if it is to be effective. Dr Puri said: "This study suggests that if patients with CFS take a high-EPA fatty acid supplement, then this should have a beneficial action on the chemical imbalances in the brain which we have identified."

They speak of EPA (Eicopsapentanenic acid,Pheneturide) as a possible treatment. It looks like the feature was based on an article in Acta Psychiatria Scandinavia 106, 3, 244 "Relative increase in Choline in the occipital cortex in CFS. B.K. Puri." But there is nothing said about EPA in the original feature. The doctor B.K. Puri is based at Charing Cross, and is a Psychiatrist. He has written quite a number of scientific papers. His favourite hobby horse seems to be EPA in various psychiatric disorders like depresion and Bipolar Disorder. I think the comment about EPA was possibly one of those casual remarks taken out of context in this case. However, EPA is derived from fish oil and is a component of Effamol Marine which in a clinical triai was proved effective in helping M.E. There was some research done in 1990 by Dr Behan using Effamol Marine (35mg GLA and 17mg EPA) which proved to be about 60% effective against placebo in 70 patients over six months. I've had a look for suppliers of EPA, and the prices seem to be around £12 for a month’s supply for unbranded products. It is also in Cod Liver Oil, 10ml containing about 900mg. But be careful, CLO also contains vitamins A & D, and if you are already taking supplements you may overdose on these vitamins. There is a product called 'Maxepa' which contains a high proportion of EPA, but is very expensive (200 capsules cost around £50). It is available on the N.H.S. for treatment as a hypolipidaemic agent for treating certain blood disorders. I'm reasonably certain that there are other equivalent products available. EPA. is in the General Sales List so can be purchased without a prescription. Bear in mind that EPA can interfere with other medicines and has side effects. If anyone is prescribed Maxepa or any other EPA product I would be interested to hear about their experiences

I've had a look for the reference, which I have obtained. It compared 8 patients with 8 matched volunteers. The technique uses MRI scan technology. Their findings were that there is about 20% more choline in CFS brains as well as changes in its distribution. It speculates that there may be an abnormality in phospholipid (fatty acid and phosphorus) metabolism in CFS. But what the research shows is that there is yet another real Physical Abnormality in the brain in CFS, and it can be measured and numbers put to it. This is a great step forward because the scan technique then can be used as a research tool into M.E. and to test possible treatments. http://www.equazen.com/newsfile_puri_cfs_sept6_2002.htm


Treatments Which Are Not Worth Trying

A personal view of treatment options not worth trying by Dr. S .Myhill.
Do you agree ???

Graded exercise. This is positively harmful when CFS is active. I find it quite extraordinary that so many doctors seem to advocate this as a treatment. It is as if they are unable to distinguish between CFS and lack of fitness! Let’s face it, if graded exercise worked then the diagnosis could not possibly be CFS. The only possible explanation I can think of as to why this has stuck in the medical folklore is that after a physician has recommended this to the CFS patient, the latter never bothers to attend again for useless advice. The doctor then believes he has cured the patient because they don’t come back. Has anybody else got any better explanation?

Cognitive Behaviour Therapy. The idea behind this is that the CFS patient does not exercise because he is afraid to because it makes him ill. CBT is all about getting round this fear. The trouble is that the patient is right – he is fearful of exercise because it really does make him ill! CBT might help the patient who is recovered from the acute phase of CFS, but on the law of averages it is far more likely to make patients worse. Patients can tolerate so much CBT because they do the exercises at the expense of other activities, not in addition to and this makes the results of trials look impressive.

Cold water therapy. This was advocated as a treatment for fatigue by Kakkar. It probably works because it gives the adrenal glands a huge "kick". However if the adrenal glands are not working properly, as in CFS, then the patient feels awful. I don’t recommend cold baths.

Amino acids. I tried these after reading a paper about amino acid deficiencies in CFS. The tests are expensive, the amino acids expensive and the results very disappointing.

Glutathione/ATP injections. Again the initial paper looked promising. I tried these on 4 patients, twice a week over six months but no response from any, so I gave up.

Enada. This sounded like the perfect treatment. I read about it in Autumn of 1998 and faxed the author straight away. No reply. Six months later it was launched with widespread publicity. Many of my patients tried it but only 2 reported slight improvement. If Enada was all it was made up to be, then it would have sold itself through personal recommendation.



Recent Meeting :Bryan Ashworth (Orchard Centre) Points raised.
A summary of points raised

Incapacity Benefit : Sheffield Trial: The DSS are trying to find an alternative to the infamous IB50 form. One scheme that they are piloting in the Sheffield area is to ask patients permission to release all their medical records to the D.S.S. Bryan's advice would be: ‘Don’t agreed’. Avoid this at all costs. The reason is that some M.E.’s may have comments likely to be taken out of context and cause problems. One person had a comment made by a dubious doctor, ‘There is nothing wrong with this guy’. This was taken out of context by an non medically qualified decision maker and benefit denied. It took reports from five doctors and two tribunals to restore benefit. What would be reasonable is to agree that your doctor can make out a report to the D.S.S., and if necessary release pivotal or relevant tests or reports. Above all, he must let you see the report before he sends it. Remember - the medical record is confidential and should not be given to anyone. The plan is a major intrusion into your privacy.

Disability Living Allowance: There is a law change to make DLA a points system like the IB50. The D.S.S. and ourselves would welcome a better system, BUT, will it be so? Issues to consider are that an M.E. sufferer cannot in all honesty answer an IB50 question. Instead, the advice is to answer as if it is their worst day. The D.S.S. get 1,500 forms per day. Forms that contain every possible space filled in are likely to be rejected. What is needed is a short sharp and sweet answer. Don’t fill in the forms yourself, seek advice first. M.E. as an illness is easy to fake, and is a common benefit fraud. There are no tests. Someone could easily read about it on the internet or in a book and put in a bogus claim. In many of the benefit cases he deals with there are arguements between the D.S.S. doctor and the clients. Did you know that all DLA and IB50 forms have to be destroyed after 14 months as confidential waste?

New Mental Health Act: Patients s Charter: There is no longer a patients ‘s charter giving rights .Welcomed by health professionals. M.E. could come under its cover as Chronic Fatigue Syndrome. Anyone refusing treatment could be ‘sectioned’, and taken into hospital against their will. The trouble with M.E. is that there are no effective treatment available. Recent news items have reported that the definitions are so broad, conditions like diabetes could be include! You may have read that the Mental Health Act is not included in the Queen's speech and will not become legislation. The day after the Queen's speech, it was put back in!

Government Conspiracy? A popular notion for UFO freaks. Bryan believea that the government know what is causing Gulf War syndrome and are not letting on. It is possible that the same applies to M.E. Are Pesticide residues being picked up by breast fed babies e.g. DDT? Are mobile ‘phones or other enviromental factors involved, including pesticides and vaccinations.

What is really needed? New clinics, with proper diagnostic facilities able to perform e.g. SPECT scans. The Coxsachie virus is implicated, but all traces of it have disappeared 12 weeks after the original infection. And yet a diagnosis of M.E. cannot be given until the symptoms have been present for six months. There are reports of M.E. being caused by M.M.R. vaccinations and children with lumber punctures. Why is there a tendency with M.E. to rheumatoid or osteoarthritis ?.

The ‘Candida’ issue. Not really. The Hypothalamus part of the brain controls the process of digestion and many other bodily functions. In M.E. it is dysfunctional and out of synchronisation. So the digestive processes are happening at the wrong time which causes apparent Irritable Bowel Syndrome. ’Candida’ is a problem, but use a diet with caution and advice from a G.P.


Treatments Which Are Not Worth Trying (continued)

Cocktails of Low Dose Antidepressants. At the British Society for Allergy, Environmental and Nutritional Medicine meeting in April 1998, Dr David Smith presented his views on the treatment of CFS using cocktails of low dose antidepressants. His theory is that CFS patients have low levels of neurotransmitters across the board, namely acetylcholine, noradrenaline, adrenaline, dopamine, GABA, serotonin and probably others. It is this which causes the multiplicity of symptoms including fatigue. He has concluded from his studies and his experience with patients that the fatigue in CFS is central - that is to say the cause is within the brain. These abnormalities are within the mid-brain, thalamus and hypothalamus and are neurological in origin. I tried these cocktails for several patients but they just developed the side effects that I see in most of my patients with any one antidepressant. I was not impressed by this approach and would not particularly recommend this line.

Fludrocortisone. The idea here (Dr David Bell) was that the fatigue in CFS is caused by low circulating blood volume and low blood pressure. He certainly demonstrated that this was the case and is probably due to autonomic disturbance. The question is what can one do about it? In theory by using a mineralocorticoid blood volume could be increased. In practice I found that the fludrocortisone simply caused swollen ankles and the blood pressure was unchanged.

Heparin by injection. Work by Dr David Berg suggests CFS may be caused by being in a state of hypercoaguability – this means CFSs get tiny clots in their capillaries which impair blood supply. This would certainly explain the multiplicity of symptoms in CFS and theoretically could be treated by heparin injections. I’ve tried these in 4 patients with no success.










DDMES Draft Helpline Guide.

I am the first contact in the group’s helpline. While I have been doing this for a number of years I feel that now that it is time to expand the service and involve other members trained to deal with the issues involved. What follows is an outline based on my experience. It is published in Pathways for two reasons. Firstly as a consultation exercise for which I am inviting comment, criticism or observations, and secondly as the information for our members.

With our M.E. Helpline there are four main groups of enquiries:-

1) Without a diagnosis, possibly suspecting M.E. As with group policy, these people are always given information and referred to their doctor for a diagnosis.
2) Recently diagnosed. These people should have been seen by a consultant to give definite diagnosis.
3) Mature cases. These are when the condition has stabilised after several years, and clients have gained the knowledge to manage their case.
4) Miscellaneous health or professional enquiries, press etc.

All these groups have differing requirements. Based on this, and information given by members in the recent membership survey, I have drafted a set of guidelines which follow:-

First Contact

Before completing questionnaire: Establish if the person concerned has a diagnosis of ME, PVFS, CFS or FMS given by a qualified doctor.

If no diagnosis, then refer to G.P. Provide G.P. information sheets.

A client in this situation may join the group as a ‘Client Awaiting Diagnosis’. Remind that part of the diagnosis criteria involves a six month wait. There is no single clinical test for M.E. The diagnosis is one of exclusion and, it is quite normal to have many ‘negative’ results to tests that a doctor may carry out. The best treatment for M.E. in the early stages is rest. There may be problems from school or employers becoming impatient and pressurising for answers which are not there. In the case of schools there may be special needs. In the case of work, advice should be given to contact the trade union or other professional adviser. On no account should the client terminate their employment as they could lose money and state benefits.

If the member has a diagnosis, fill out a questionnaire. The point of the questionnaire is to provide a structured approach and to ensure that the client gets all the help and support available.

The following are specific points:-

1) Name, Date of Birth, and Gender. If the client is a child work with the parents. If the client is too ill to interview work deal with the carer or next of kin.

2) Marital Status. A high proportion of adult clients may have marriage problems or be separated. There may be problems especially if the women has M.E. Refer to another agency or a marriage guidance service.


3) Year of first ill health. This is important because many clients have a long period of ill health prior to diagnosis. There may be work or home related problems which can be attributed to undiagnosed M.E. in retrospect.

4) Year of first ‘fatigue’ diagnosis. This is important for statistical reasons. If the client has been ill for a number of years the chances of full recovery are poor. Clients with a diagnosis of less that a year have the best chance of recovering. Almost all patients recover to some degree.

5) Diagnosis ME / CFS / PVFS / FMS. CFS is given to clients of the Leeds clinic. FMS clients have physical problems. The exact diagnosis is often an administrative issue and depends on the speciality of the doctor and district policy. Different doctors may give a different diagnosis to the same patient.

6) Diagnosis Given by G.P./ Consultant / Hospital Clinic / M.E. Clinic / other
It is important to know if a consultant level diagnosis has been given. If not this could result in problems with school, DWP benefits, work and subsequent attitudes to the client by other health workers.

7) Any other co-existing major health problem? This is important because the effect of M.E. has to be taken in context. It may not be the most serious illness a person suffers and may be incidental to other more serious life theatening conditions. Fear of adverse experiences has made many clients delay other important medical treatments, and be reluctant to seek other medical help. It may delay recovery after an operation.

8) State of illness now is Acute onset / Chronic / Recovering / Improving / Rehabilitation / Fully Recovered. This is important to gauge the needs of the client and the stage of the illness. Clients should have been seen by a consultant early on and receive constant supervision of their G.P. Clients should use NHS services and not seek alternative or other treatments until their condition is stable as this may mask other problems. This usually occurs after 18 months to two year after diagnosis.

9) Source of care Hospital / Private Doctor / NHS doctor / Therapist / Alternative. All patients should have a diagnosis confirmed at consultant level. The G.P. should review their case at least once a year or if new problems occur. Therapists generally have more time for patients than doctors. Patients should beware of information from none medical sources, especially the internet.

10) Type of Care Drugs (Pain Killers) / Drugs (Antidepressant) / Drugs (other) / Herbs /alternative. Painkillers NSAID and &compound Opiates may help with pain control, but TCAD Antidepressants, Neuroleptics or TENS devices may be needed in some cases. Refer to doctor or local pain clinic. TCAD’s are really the only effective drugs for symptom control. M.E.’s are sensitive to high doses of TCAD’s and may suffer side effects in ‘normal doses’. Most G.P.s don’t know this. Many doctors who treat M.E.s recommend starting on the very low dose and working up. The most popular are Amytripyline or Trimipramine. Recent medical literature suggests that Dothiepin is associated with log term heart disease. We have found that most M.E.’s suffer side effects from Prozac or Seroxat. The expertise to treat M.E. is found mostly within the private clinics outside the NHS. In all cases refer back to doctor with information.

11) What is your mobility limit unaided ? Bed / Bedroom / Home / Home / Garden / Street / Locality/ Town / Unlimited. This gives an indication as to whether the client should apply for DLA Mobility and a Blue badge.
12) Do you use a mobility aid? None / Stick / Scooter / Wheelchair/ Car other
Sometimes doctors underestimate the need for help, particularly wheelchairs.

13) Do you need help with Personal Care? None / Occasionally / Sometimes / Most of the time / Always. This will give an indication as to whether a client should apply for DLA personal care and whether domestic or personal help is needed. Refer to social services.

14) Are you able to Work to earn money ? Not at all/ A Few Hours / Part time/ Full time. Does provide a indication of possible employment problems.

15) Do you have your own income? Private pension / Work pension / Wages / Family. This establishes whether an occupational pension is possible. There may be difficulties. May indicate unclaimed state benefits such as AA and ICA.

16) Do you receive State benefits ? Incapacity Benefit / SDA / DLA (care) / DLA
(Mobility) / Jobseekers / Income Support. Most clients should be claiming a sickness/income benefit and a DLA.

Subsequent Sessions.

Common Problems.

1) Unsympathetic doctor. If the doctor patient relationship has broken down then the best thing is to change doctors. It may be possible to see another doctor within the same practice. The best doctors for M.E. usually have a full list. A private G.P. is an alternative, but all treatment and medicines will have to be paid for. A doctor who is hostile or doesn’t believe in M.E. should be approached directly and given the appropriate information.

2) Refusal of State Benefits e.g ICB & DLA. Clients should not fill out the forms themselves but be assisted by someone trained to do so. Generally the fault lies with the client mistating their case or, the examining doctors’ report. Usually a tribunal is the only solution. We refer on to other agencies as we do not have the expertise or resources to handle these cases ourselves.

3) ‘Cures’, ‘Herbal Beverages’ or alternative treatments. The only effective treatment for M.E. is rest. There are no proven licenced medicines that cure M.E., and any treatment offered can only offer symptom control at best. Some treatments offered in the private sector do help but carry risks. This should be only done under the supervision of a doctor.

4) Driving. Usually car licences are no problem but HGV and PSV licences are. The DVLC medical section should be informed. Usually there is no problem. M.E.’s who can drive find an automatic car with power steering helpful to overcome fatigue & concentration problems.

5) Difficulties with Social Services, Schools etc. Very often the problems are caused by inaccurate information being given to the agency concerned by misinformed medical advisers. These need direct intervention to the agency with assistance from other organisations.

Non Specific Problems:-

The G.P. and/or Health professional must be involved at all times. Clients should be referred to the appropriate organisation to deal with their problems if the problem is not within our objectives.


Have you thought about getting a State Pension Forecast ?

If there is one good reason to complete and send off Form BR19 in order to receive your ‘State Pension Forecast’ it is to enable you to be sure that National Insurance Credits are being correctly applied, year by year, for those receiving benefits due to long term illness. These should have been credited too, if you have been receiving state benefits e.g. Incapacity Benefit or certain cases of Income Support. Some people who have not claimed these benefits will suffer a reduced pension as a consequence. Documents like P60 and the second page of benefit books should be retained as you may be asked for proof in later years

So much has changed in these past few years. For instance the introduction on 6th April, 2002, of the ‘State Second Pension’ which reformed SERPS to provide a more generous additional state pension for people with a long-term illness or disability, as well as for low and moderate earners and, certain carers.

Dial Doncaster

Dial Stands for Disability information and Advice Line they are a registered Charity with Branches throughout the country providing free confidential advice and information. During a meeting in the Autumn we were visited by DiAL's Community Development Team, Sarah Robinson and John Burke,. who gave us a presentation. There followed a discussion about problems experienced by our members. There is a problem in that information can only be supplied by the D.i.A.L. office to people living in the Doncaster Borough Council Area. However there are various branches throughout the country covering most major towns. The services that they provide can can be accessed via the Internet, Telephone or Personal visits and summarised as follows:-

Fact Sheets: Subjects include: Accessible and Auxiliary Dentists and Opticians, Car Adaptations and Assessment Centres, Caring for someone in their own Home, Car Parks and Bays, Children with Special Needs, Confidential Counselling and Support Services, Disabled Driving Tuition, Equipment for Independent Living, Equipment Hire, Motability, Blue Parking Badges, Prescriptions, Road Tax Exemption, Wheelchair Hire and Supply.
Information Sheets: mainly via the internet: Winter Fuel Information and Download an Application form, Disability Discrimination Act, Education, Employment, Disability, Property, Goods, Facilities and Services and Transport, Disability Rights Handbook.
Benefits Section: Internet pages and packs are designed to give an overview of the Main Disability Benefits available to people with illnesses or disability. They give a quick guide to eligibility and a breakdown of the relevant questions asked by the Benefit Agency with regard to specific conditions/illnesses. A copy of the Self Help Guidance Pack. This Pack offers Advice on eligibility, gives page by page Advice on form completion and what happens after a claim is made. Examples include Disability Living Allowance Criteria / Attendance Allowance Criteria, Incapacity Benefit (IB50) Application.
Photographic Services: need a passport type photograph for a blue badge? Problems using booths? Use the Photograph Service provided by D.i.A.L. Doncaster.
Wheelchair Hire: D.i.A.L. Doncaster has now introduced a wheelchair hire department.
DiAL On-Line: Evaluation Form About Yourself Name (Optional): View Links starting with Abbey Mobility Services Ability - information and links for people with disabilities. Access-Ability - information and resources for people with disabilities and so on.
D.i.A.L. On-Line NewsLetter: For Sale and Wanted Items as well as information about above services. Events Diary, listing of forthcoming events relating to Disability and the Voluntary Sector. News Stories featuring stories and articles from D.i.A.L. Doncaster and other organisations throughout the voluntary sector.
Dialchat: Dial's own Internet Chat Room to enable you to discuss disability issues.
Community Development Outreach Surgeries: Local Outreach surgeries for free confidential advice and information on Welfare Benefits, Careers, Further Education and many other subjects. Forthcoming dates and venues as follows: Goldsmith Centre Sprotborough on February 4th from 1.30-3.30.p.m. Mexborough Library Feb 5th and 19th from 10-12 noon. The Redmond Centre Carcroft on Feb 7th and 14th" and 21st. Woodlands Family Centre on 10th Feb. , Balby Family Centre on 10th Feb and The Linney Centre Balby on 17 Feb.
Contact Dial DiAL DONCASTER, Disability Resource Centre, Heavens Walk, Doncaster DN4 5HZ Tel: (01302) 327800 Minicom: (01302) 768297 Email: advice@dialdoncaster.co.uk. Web:www.dialdoncaster.co.uk. Please NOTE!! Due to internal ‘phone problems we are only running a temporary answerphone on 01302 327800. If you leave your Name and Number we will endeavour to return your call as soon as possible. Normal service will be resumed as soon as possible.
 

CFS or Depression - what are the differences?

By Dr. S Myhill

Physicians can be very naughty and intellectually lazy when it comes to diagnosing CFS. They are all too willing to label patients as depressed because this leads on to a straightforward and well recognised management protocol- namely, anti-depressants, exercise and, if you are lucky, counselling. Anti-depressants in normal doses will make you worse, as will exercise. Counselling depends on the counsellor – if they do not believe CFS exists then you have problems.

There are clear distinctions between the two conditions, including the following-

1) Exercise- this makes CFS patients much worse but can be positively therapeutic in pure depression.
2) Muscle tenderness and pain is common in CFS, and unusual in depression.
3) Response to alcohol and anti-depressants. These almost invariably make CFS patients worse, but depressed patients often get benefits.
4) Sleep disturbance- in CFS, the biological clock is moved on so patients go to sleep late and wake up late in the morning. With depression, one expects to see early morning wakening.
5) Adrenal function. In CFS, this is usually depressed, whereas in depression, there may be associated anxiety, with raised levels of cortisol.
6) CFS patients often have poor immunity, with recurrent infections. This is not generally a feature of depression.
7) If you can get the tests done, then there will be differences in neuro-psychometric testing, which demonstrate a different type of cognitive disturbance, memory loss and mental agility in both illnesses.
8) SPECT and PET scans demonstrate diminished metabolism in the brain stem, medial and frontal lobes of the cerebral cortex in ME, whilst in depression, diminished metabolism is more widespread and the frontal lobes are chiefly affected.

Comment. This feature is intended to deal with doctors who cannot tell the difference between M.E. and Depression. Bear in mind that as many as 30% of M.E.’s may suffer reactive depression, and some will have endogenous depression as a separate complaint. This is why it is important to attend CFS clinics like in Leeds who have the expertise the to sort these things out.
 

Anaesthetics and ME/CFS Dr Myhills from her website…

This is a problem for patients with ME/CFS for three reasons.
1) Firstly ME/CFSs are much more likely to get idiosyncratic (i.e. unusual reactions) to drugs compared to the normal population. Nearly all my ME/CFS patients react badly to any amount of alcohol and to normal doses of antidepressants. There are several possible reasons for this – the brain may be abnormally sensitive (reflecting a general sensitivity in these patients) or there may be poor detoxification of chemicals in the liver. This means that “normal” reactions to anaesthetics (e.g. taking a long time to recover consciousness, feeling groggy the next day) may be more severe or more prolonged.
2) ME/CFSs have a problem because of multiple chemical sensitivity. These patients react in an allergic way to unrelated chemicals.
3) Any anaesthetic is a stressful event and ME/CFS patients do not tolerate stress well.

A related problem is that ME/CFS and hospitals do not combine easily! The quality of food is hospitals is usually diabolical with little or no provision for allergy problems (food allergy does not exist in conventional medicine), the beds are uncomfortable, there is no peace from light, noise, heat and disturbance (least of all at night), there are all sorts of chemical smells, but worst of all there is an almost complete lack of understanding for the problems of ME/CFS patients with “helpful” nurses encouraging you to “do it all yourself” and “start exercising as soon as possible”! Local anaesthetics. Some patients have a problem with the adrenaline in local anaesthetics. This is easily got round by not using it (adrenaline makes the anaesthetic last longer). The above factors mean it may be difficult to predict how you will react to an anaesthetic. You are more likely to get problems if you have had a previous bad reaction to an anaesthetic, you know you get bad reactions to chemicals, you have food allergy problems, your ME/CFS is bad, or your ME/CFS was caused by chemical exposure (organophosphates, drugs, etc).

The surgeon and anaesthetist can be told that you want the smallest dose of anaesthetic possible. Use local anaesthesia wherever possible. Anaesthetics are used for two reasons – firstly to knock you out so you sleep through the whole proceedings (this is obviously an excellent stress blocker but I suspect partly so the surgeon and assistants can have a good natter without you listening in!) and secondly to block pain. If the pain blocker can be done with local anaesthetic then the total load of drugs can be reduced and reactions lessened accordingly.

The main reaction to anaesthetics will be a worsening of your ME/CFS symptoms. At one stage there was a suggestion that ME/CFS induced by organophosphates could result in idiosyncratic reactions to muscle relaxants which caused a prolonged paralysis for hours after the anaesthetic requiring ventilation. This was investigated by the Royal College of Anaesthetists who concluded there was no greater risk than one would expect compared to the normal population.

If your need to go into hospital for treatment you should attend. Don’t let fear of M.E. put you off. It may be necessary to endure certain problems, but remember M.E. is just usually an inconvenience, but what you are being treated for may be critical or life threatening. Take the lead and make clear to doctors what your problems are and give them the necessary information sheet.
Form BR19 can be got from any Social Security office or, write to request a form to be posted to you from the following address:-

RPFT, The Pension Service, Tyneview Park, Whitley Road, Newcastle-upon-Tyne, NE98 1BA. (If you have difficulty in writing then telephone 0845-3000-168 and the Retirement Pension Forecast Team will fill in the forecast application form with you over the telephone).

WHAT YOUR PENSION FORECAST WILL TELL YOU

It will forecast your basic state pension in today’s money values.
It will forecast what you have earned already and what you can expect to earn at state pension age.
It will tell you what, if anything, you can do to improve your Basic Pension.
It will tell you of any Additional Pension you have earned and what Additional Pension you can expect at state pension age, based on what you have earned already and what you might expect to earn before you retire.
If you are widowed or divorced it will explain how your former spouse’s National Insurance Contributions can sometimes be used to help you get a better pension. (Spouse means either husband or wife).

A very useful booklet entitled “State Pensions Your Guide”, can be got by telephoning 0845-7-31-32-33 or, if you are on the internet you can access this leaflet online at:-
www.thepensionservice.gov.uk Carolyn


A Disease of Many Names.

When it became obvious to me that I was heading for a diagnosis of ME/CFS I began to read up about the condition. It soon became obvious that the condition had been known by many names in the past. Since then what has become increasingly clear to myself is that the label given to a patient depends on the context in which the diagnosis is made. What is really striking is that although the names vary widely, they all tend of follow the same similar cluster of symptoms. So really what we are really looking at is a common result of ‘damage’ to our bodies that is from a host of different causes. I list here those which I have come across.

Chronic Fatigue/Immune Dysfunction Syndrome CFIDS; Chronic Fatigue Syndrome: CFS; Chronic Immune Activation Syndrome; CIAS; Chronic Immune Dysfunction Syndrome; CIDS; Fibromyositis; Fibrositis; Fibromyalgia; FM; Chronic Epstein-Barr Virus Syndrome; CEBV; Chronic Active Epstein-Barr Virus Infection; CAEBV; Myalgic Encephalomyelitis; ME; Myalgic Encephalopathy; ME; Benign Myalgic Encephalomyelitis; Atypical Poliomyelitis; Post-Viral Fatigue Syndrome; PVFS; Postinfectious Fatigue Syndrome; Iceland Disease; Akureyri Disease; Tapanui Flu: Royal Free Disease; Epidemic Vegetative Neuritis; Chronic Mononucleosis; Familial Chronic Mononucleosis; Persistent Myalgia Following Sore Throat; Ecological Disease; Multiple Chemical Sensitivity Syndrome; Allergic-Fatigue Syndrome; Chronic Fatigue State; Antibody Negative Lupus; Antibody Negative Lyme Disease; Lyndonville Chronic Mononucleosis; Atypical Multiple Sclerosis; Epidemic Neuromyasthenia; Neuromyasthenia; Neurasthenia; Neurocirculatory; Asthenia; Fabriculla; Yuppie Flu; Yuppie Plague; Raggedy Ann Syndrome.

Focus on Fibromyalgia.

Because of the similarities of FMS with ME/CFS and because there is no local Doncaster FMS support group, we included it in our remit. There are a number of common factors which I will try and explain.

FMS and CFS and the other conditions, form a family of overlapping syndromes. There two schools of opinion. Firstly, most patients have more than one syndrome, or they are all variants of the same disease. The research criteria for diagnosing FMS is widespread pain in all four quadrants of their body for a minimum of three months in at least 11 of the 18 specified tender points. There are other commonly associated symptoms. Similarly as with ME/CFS there is no laboratory test, x-ray, or scan, which can be done to confirm the condition. The diagnosis is based on the exclusion of other clinical conditions and observation.

The equivalent criteria for diagnosing CFS is Fatigue; severe, unexplained fatigue that is not relieved by rest, which can cause disability, and which has an identifiable onset (i.e., not lifelong fatigue). It must be persistent, or relapsing fatigue that lasts for at least six or more consecutive months. There must also be at least four or more overlapping symptoms some of which overlap with CFMS. There is also an overlap with M.E. I have included the symptoms for FMS and CFS with those reported by our members, and from a survey of ME patients conducted by Dr. Betty Dowsett in 1990 in a comparison table.

So why do people get FMS? In many cases there is a history of whiplash or back injury. A number of biomechanical and hormonal abnormalities have been found in fibromyalgia patients. There is a decrease of phosphate energy stores in red blood cells and muscles. Sympathetic nervous system activity (the part of the nervous system which controls unconscious functions, e.g. heart and intestines) is reduced, and there is a decrease in certain chemicals in the central nervous system (brain and spinal cord). Abnormal intrusion of alpha waves into the delta phase of deep sleep may explain why sufferers of fibromyalgia experience daytime fatigue and do not find their sleep refreshing.

Apart from the usual pain control drugs and TENS machines like in M.E., people seem to respond to the TCAD antidepressant Amitriptyline in a low dose of 10-25mg, and low sugar diets, as well as magnesium. As there is no specific treatment, people tend to go for alternative and complimentary therapies. Some people claim to have derived benefit from a variety of dietary supplements, including magnesium supplements, gamma linolenic acid (evening primrose oil), omega fatty acids (fish oil), malic acid, trytophan, but there is no clinical proof known of.
There is a national organisation called The Fibromyalgia Association UK, P.O. Box 206, Stourbridge, West Midlands. DY9 8YL.

FMS CFS DDMESHelpline ME SurveyDowsett
Waiting period 3 month 6 month 3+ month 3+month
Diagnostic Criteria Score 11 /18 tender spots Fatigue +4 symptoms *
Fatigue. ± * + 100%
Pain muscle. ± * + 80%
Pain, multi joint. ± * ± 28%
Irritable bowel type. ± ± 49%
Sleep disorder., ± * + 64%
Chronic headaches, ± * ± 74%
Jaw pain (including TMJ dysfunction). ± - -
Cognitive & or memory problems. ± * + 77%
Post-exertional malaise and myalgia. ± * + 100%
Morning aches & stiffness, ± ± ±
Numbness and tingling sensations ± ± 61%
Dizziness or light headedness. ± ± 72%
Skin and chemical sensitivities. ± ± ±
Sore throat. - * ± ±
Tender lymph node. - * ± ±
± = optional, - = absent ,+ = always present ,*= mandatory

The G.P.s Blood Routine Tests.

These days G.P.’s will take blood tests as matter of routine rather than make a physical examination. This is because the various tests done can tell a doctor far more about your body than a simple examination would reveal. Most fatigue patients have these tests done as part of the diagnostic screen when they are first ill, and then thereafter as part of the routine care. CFS/ME patients are not exempt from other medical conditions, and as with people who suffer other chronic conditions it is important that they see their doctor on a regular basis, maybe every six months for a review and screening for other conditions which may develop, and although quite minor, may contribute to fatigue. For example, given time, many of our members will develop thyroid problems which make fatigue worse, but fortunately can be easily be treated.

The blood is usually drawn from a syringe, put into a vial which contains certain chemicals to stabilise and prevent the blood from clotting. These chemicals vary according to the test done, and are usually colour coded. As a rule when samples are sent off to the laboratory they are converted to a number, and are compared to something called 'the reference interval' in a report to the doctor. These are two numbers between which if the result falls it is considered ‘within normal limits’. Usually the doctor will tell the patient the test is negative or normal. Also bear in mind that the reference intervals used by different laboratories may vary, and the interpretation of individual results may vary.

There are abnormalities in certain hormones (e.g. cortisone, prolactin and arginine vasopressin) which come under the control of a part of the brain known as the hypothalamus., but these tests would only be carried out by a hospital. Some M.E. specialists will order a Red Cell Magnesium test which shows abnormalities in ME, but is not very often done in the GP's surgery.

M.E. and the Thyroid Connection.

The problem is that some tests on ME/CFS patients show variances within normal limits that normally doctors do not take into account. For example in thyroid tests the amount for free T4 (thyroxin) is considered normal between 9 -22. The majority of M.E.'s fall into a sub- group with readings between 9 -12. These results are considered ‘normal’ by most GP's and no treatment would be given unless the number went to 8 or less. However certain doctors who treat ME's believe that reference interval for M.E.s should be 12-25, and so would treat people showing 12 or less with oral thyroxin. This is controversial; not accepted by all doctors. The following is lifted from a recent Sheffield group newsletter describing the problem in a different way.
Many M.E. sufferers have been helped by having a low level of circulating thyroid hormones diagnosed and treated, whilst others have been given 'normal' thyroid hormone readings and therefore no further action has been taken. One problem is that a blood test in many cases tests only T4, the thyroid hormone which is produced by the thyroid gland and which circulates in the bloodstream, whereas a test for the T3 hormone, which is the active form which the body makes in other tissues, gives a much clearer picture of what is happening. Another consideration is that there is a very wide range of 'normal' readings, and someone could have what appears to be an average reading whilst it is still in fact a low reading for that individual. Many doctors, and the World Health Organisation as well, do not consider that the accepted 'normal' range is helpful in all cases. Though thyroid replacement therapy is NOT a cure for M.E., many M.E. specialists, including Dr Skinner, Dr Myhill and Sheffield's Dr Hayes-Allen, are in favour of using it when symptoms indicate a thyroid insufficiency. However, Dr Betty Dowsett and Dr Charles Shepherd are not in favour because of possible adrenal complications.

Test Meaning What is tested What Abnormalities could suggest to a doctor. Relevance to ME/CFS
ESR/CRP Erythrocyte Sedimentation Rate How long red cells take to sediment/Acute phase protein changes A red light for disease. Just tells the doctor something is wrong but not what. Is usually lower than average is M.E. so considered normal
FBC Full Blood Count Test blood components, red cells and haemoglobin . Anaemia and other blood diseases. Usually within the normal range, but red cells may be slightly about average.
WCC White Cell Count The abnormalities in shape and populations of subtypes. Leukaemia, AIDS, Infections allergies, toxocara. May be minor abnormalities present.
U & E Urea and Electrolytes Checks the salts, urea and other kidney metabolites. Kidney disease, bone disease, Addison. Usually within normal range
LFT Liver Function Tests Test metabolites and products of liver damage. Liver disease, Gilberts syndrome M.E.s taking tricyclics may show mildly raised liver enzymes.(ALT)
GLU Blood Sugar Blood glucose Diabetes, Cushings syndrome Many be low side of normal in some cases of M.E.
TFT Thyroid Function Tests Blood levels of TSH, T4 and others Hypo or hyper thyroid disease. M.E.s may show up on the low side of normal.
Physiotherapy or Pacing

Elaine Popper is a supervising physiotherapist at Doncaster Royal Infirmary who came to our meeting to talk about her work. Being a physiotherapist is a separate profession within the N.H.S. and people have to train to degree level to gain the professional qualification.

What is Physiotherapy ?
It is a strategy to teach people how to help themselves. It is about motivation. Healing by physical means to get the best out of a person using the faculties that they have left.

Who can benefit ?
Physiotherapy focuses on the self-help of people with chronic diseases like stroke, heart disease, multiple sclerosis etc. These people have suffered a catastrophic event. They have an unexpected diagnosis and have problems such as pain and fatigue. Usually when a diagnosis is given it is for the rest of a person's life. They have to come to terms with it.

What is a typical scenario for you to help a person.
a) Diagnosis
b) followed by a feeling of being stunned or shocked. People may then come into a state of denial (minimisation).
c) Depressive phase.
d) Letting go period.
e) Questions. Why me ? Who to blame.
f) Need vision and incentive.
g) Acceptance
h) Get on with life.

How long does it take to go through this process?
For some people it can take days. For some it can take years.

At what point do you intervene ?
Our job as a physiotherapist is to recognise what stage a person is in and help them through the stages. We have to consider what the person thinks, what the body does, what the beliefs are; in effect, consider the person's body, mind and spirit.

Is there a name for the strategy you use?
Yes. It is called PACING. We help people with chronic diseases to realistic achievable goals, through an action plan. This requires a balance of rest, exercise and relaxation, with stress management.

Why does DRI not provide pacing to our members ?
The is no stategy for M.E. within the D.R.I. There is, (as in most areas of the N.H.S.) also a chronic manpower shortage of physiotherapists. Doncaster is no exception.

Is there any other help in Doncaster ?
Yes, SYCIL have formed a Self Advocacy Group which may help. Details are available on 01302 769219
Radio 4 Programme 'Money box'. (Saturday 3rd May 2003)
Review by our volunteer Carolyn
The programme started by say that in recent years ME/CFS has become better understood. However as far as the DSS go there is a lack of understanding which puts a big barrier up to people accessing social security benefits paid.
The programme featured the case of Jay Ganatra from Rochester in Kent, a graduate engineer, who has not worked since he was diagnosed with Chronic Fatigue Syndrome 10 years ago. He receives Incapacity Benefit of £87 a week and has been refused DLA. Jay is now appealing against the benefit refusal, saying that without this money to run his car he cannot even get to the supermarket to feed himself. He says that system does not recognise that he has mobility problems, caused by fatigue and pain, as he can get up out of a chair. But compared to other people with ME or Chronic Fatigue Syndrome, Jay is quite fortunate. Most people fall at the first hurdle when they make a claim for Disability Living Allowance. He complained that the problem seems to be that the people assessing information given to them just do not have sufficient understanding of this condition, and how it works. The questions he was asked about his illness and his mobility do not allow a for full understanding of his condition. Questions like, how far can he walk, can he get up out of a chair do not convey the full picture of his illness which included fatigue and pain.
Cathie Hammond, is a research officer at the Institute of Education and has looked at the difficulties people with ME face in claiming disability benefits. She agrees with Brian Ashworth, from the Orchard Centre for Fatigue Ilnesses, that people are not getting the benefits to which they are frankly entitled. Cathie thinks the 50 page claim pack, as well as being daunting, does not ask the right questions. Her findings suggest that the difficulties in presenting accurate information on the form, mean that people with ME are more likely to get home visits from Benefit Agency doctors, who often do not support the claim.
Brian Ashworth (who is well known to ourselves) who appeal tribunals, says the process has flaws. He agrees with Cathie that the system is not working. He says their success rate is 97%, and Brian, who has represented nearly 400 cases in the last few years, speaks volumes about flaws in the process. What is happening in very many cases, is that people are not getting the benefits to which they are frankly entitled.
There is a political ally too. Liberal Democrat disability spokesman, Paul Holmes thinks the problem is down to a lack of medical expertise and understanding, and an over-eagerness to rush people through the system. He is also critical of SchlumbergerSema, the company contracted to provide medical examinations for the Department for Work and Pensions. He told Money Box that SchlumbergerSema "has been criticised by a Select Committee report in 2000, the National Audit Office in 2001 and the Public Accounts Committee in 2002. It's a recurring theme, that they're pushing people through too quickly".
But of course the DWP told Money Box it is mindful that many illnesses can vary in intensity and current medical training recognises this. Not our experience! However, the government is trying a new claims application system for disability benefits in a trial in Glasgow which is due to complete in the summer. This suggests they do acknowledge problems.
Comment: ALL were basically saying that the wording of the questions on the forms isn't right for sufferers of ME, and other related illnesses. What came out of this programme is that in Glasgow a trial is being run by the government using a new form of questioning for assessing for DLA and the trial ends in June. However, it does show that the powers that be maybe beginning to realise that things are not at all fair within the benefit system for people with ME. As they said, the problem the medics do not understand is that if there was a fire in Jay's house he could get out of his chair and get out of the house. How much he could do after that for a number of days is the problem!
The Citizens Advice Bureau in Thorne.
or
Broad Shoulders and a Helping Hand

Here at the North East Doncaster Citizens Advice Bureau we can help individuals with a very broad range of subjects. In the last year we have dealt with 20,000 enquiries covering issues such as; work problems, legal advice, benefits/social security, money advice, local taxation, rents and tenancies, family and personal disputes, local information, consumer rights and much, much more.

Whether you need help; to find out what benefits you are entitled to, with filling in a claim form, to discover what your legal rights are or you need somebody in the know to help fight your corner on any number of issues then the Citizens Advice Bureau are here to help. There are specialist advice workers for welfare rights and debt issues as well as generalist advisors, all of whom have access to a large collection of books and a vast database of information that is updated regularly with the latest policy amendments and reforms. This means all our information and knowledge is not only up to the minute but covers topics at the individual, local and national levels.

We operate a Free, Confidential, Impartial and Independent information service that is available via a drop in session, appointment or telephone call with home visits available for those unable to make it to the bureau.

The North East Doncaster Citizens Advice Bureau has three offices situated in Thorne, Moorends and Stainforth:

Thorne: Marriott House, 5a Browns Lane, Thorne, Doncaster, DN8 5AF
Open: 10am - 2pm Mondays and Wednesdays, 10am - 12.30pm Fridays
Advice Line: 01405 814064

Moorends: The Winning Post Centre, Marshland Road, Moorends, DN8 4PB
Open: 10am - 2pm Tuesdays
Advice Line: 01405 740489

Stainforth: 14 Church Road, Stainforth, Doncaster, DN7 5AA
Open: 10am - 1pm Monday to Thursday
Advice Line: 01302 842845

Benefits Line: 01405 740641
Debt Line: 01405 741457

Even if you think we won’t be able to help, give us a try because if we can’t help directly we may be able to put you in touch with someone who can!

Pathways No 49.

May 2003.

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Doncaster Carers Partnership.

Janet Budden gave a talk about the organisation at a recent group meeting
The organisation was originally started in 1992 when Elaine Tuddenham and others squatted at the Lansdowne Centre in Intake, which was earmarked for closure. At that time Elaine had an elderly parent with Alzheimers, and was disgusted in the treatment she received through the various agencies as a carer. That action lead to the organisation called PEACE (Partnership to Enhance All Carers' Existence) being formed, and receiving funding from DMBC and the NHS, and later becoming a registered charity. Due to the success of the organisation, it became evident that the PEACE image could easily be confused with other organisations e.g. ‘Green Peace’ or ‘Ban the Bomb’ so the name was changed to Doncaster Carers’ Partnership. Although the organisation receives more of its funding through grants, much of the management work is still undertaken by volunteers and trustees, with an annual budget well into six figures. In order to give them some protection to the trustees, the organisation took on company status in 1999. Doncaster Partnership for Carers is a Local Independent Organisation offering a free, confidential and impartial service, to Carers of all ages within the borough of Doncaster. In principle the organisation supports people who care for someone who may be frail or elderly, have a physical disability or illness, learning difficulties, mental health problem, a sensory disability, be misusing substances such as alcohol or drugs, or have HIV or AIDS. The organisation is divided into a number of projects:

1) The Lansdowne Carers Centre This is a drop in centre for Carers, open Monday to Friday 10am-3pm, offering a free meeting place for carer support groups and admin. support to groups, and monthly coffee mornings. Lansdowne Carers Centre Lansdowne Road, Intake, DN2 6QN. Tel: 01302 814494/341240 ~ email: dpfc@carers.net . www.doncastercarers.cjb.net

2) Support and Development Project. This offers support to individuals and local support groups to look at options available and make informed choices. It also offers assistance, with development, to assist carers to form support groups and to aid their development, offering on-going support

3) Young Carers Project. This service offers a friendly support service to young people 21 years or under who help care for someone close, or who feel their lives are impacted in some way by care needs within the home. They can be contacted in confidence, and offered the following:- Meet new friends who understand; join in activities and have fun; help to cope at school; access further education and employment, and support for the family. They can be contacted at The Young Carers Project, Oswin House, Oswin Ave, Balby, DN4 ONR. Tel: 01302570077 E-mail: donyoungcarers@carers.net
4) Asian Advocacy Project. Ethnic minorities are very reluctant to seek outside help from their community. This project works with the Asian community to raise the profile of Asian carers. By working together we can identify your needs and highlight any gaps there may be in service provision. The service offers support to access services and to meet new friends.

5) The Advocacy Project. This is about supporting someone to speak up for themselves, or to speak up on their behalf. Advocacy can help with access to access services; at Welfare Benefit appeals, and if you have a concern and/ or a complaint about services.

6) Home Visiting Team . This is Janet's area. This consists of five part time workers and one volunteer. They offer support; information, and Advice, to Adult carers by means of home visits, giving someone to talk to, assistance with welfare benefits/form filling, and Social events. The problem is they are limited due to funding to covering the DMBC area for carers 18 and over. Janet told us that in eight years the project had made several thousand plus contacts with carers. They do not close cases and fit everyone in as best they can. The target visiting time is 7-10 days, but in certain emergency cases, they have responded in 15-20 minutes. The Home Visiting Team can be contacted at Oswin House, Oswin Avenue, Balby, Doncaster. DN4 ONR Tel: 01302-311700 E-mail: homevisiting@carers.net.

For people living outside the Doncaster area there are other organisations, e.g. the Princess Trust and DiAL.
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Pathways No 50.

August 2003.

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Trevor in his ‘Prisoner Cell Block M.E. Uniform’ on
M.E. Day May, 12th
in London. The choice of date is to commemorate Florence Nightingales’s birthday. She suffered from a fatigue type illness. after her return from the Crimea War.
Supporting Myalgic Encephalopathy or Encephalomyelitis (ME),
Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Fibromyalgia Syndrome (FMS), Patients & Carers. Registered charity No.1095209
12th May, A Day in London.
My Personal Refections by Trevor Wainwright

After a four and a half hour bus journey, myself and Jeanette made our way to the Department of Health. I had decided to wear the quipu from last year, this year it had an extra knot in it, 10 years now, where had it gone? What had the establishment done? ‘Not enough’ I thought, or there would be no need for us to be doing what we were doing. Arriving at Richmond House we noticed the MEACH minibus had arrived first. Crossing the road introductions were made. We liaiseed with the police as to guidance for the day there would be no problems. It felt good; this was it, the authentic voice of people with ME in action.

John Edmonds, General Secretary of the GMD Union arrived. He was to be Simon Lawrence’s (Chairman 25% Group) Carer for the day. After being introduced to Simon he mingled with the rest of the group. More people arrived, faces were put to names, hugs, handshakes, banners were put up, one bearing the words “Sound your horn if you believe in ME” they did, only a few, but each was acknowledged with a wave and a cheer. “I don’t believe in it” shouted one driver, the only one to do so, “you would if you had it” shouted back Jeanette, holding the banner at the roadside. Moving out into the road slightly as an official looking car came out of Downing Street; it drove past, inside a slightly gone out looking Tony Blair viewing the poster.

It rained; it would continue to do so all day, but the group didn’t seem to mind, they were talking to each other listening, to each other; a wonderful feeling of friendship. Each person playing their part, playing it well, from carers to the severely affected. Even the wheelchairs had banners. The prisoner’s outfit was fastened to some garden canes bearing the poster “Prisoner Cell Block M.E.” then somebody suggested it be worn, everybody agreed so on it went. It seemed every group was represented, even the minority groups. I took a step back surveying the scene again. People were talking to each other, listening to each other. Communication. Good communication between people who had previously known each other as names on a mailing list or, at the bottom of a letter. Now they were now sharing experiences face to face. I watched as a young demonstrator politely offered ME information leaflets.

One o’clock, so off to Downing Street. Jeanette was given the honour of knocking on the door of number 10, a custodian opened it. Beth offered her hand, he shook it, then she handed over the petition. Simon present the submission on behalf of The 25% Group, Paul on behalf of RiME and Jane Colby on behalf of Tymes Trust. More photos. Then it was the TV interview, Beth first explaining about the illness, its debilitating effects and the need for a cure; the need for the turning away from the psychiatric treatments, Chris from the point of a Carer, both explaining the need for research into the physical causes, both ultimately wanting a cure. I was proud of what they said and how they said it, ‘nobody could have done better I thought’. John was asked if he would talk about why he was here, he did so with great conviction about the needs of the people and how they should addressed.

After Downing Street, Simon helped by John, went into the Department of Health with another presentation. The remainder made their way to Parliament, where arrangements had been made for the use of a Committee Room. What must the people in the queue have thought, a prisoner walking straight in, even more so what did the people inside think, when they saw the prisoner walking through Parliament. Gradually everybody arrived and it was to the committee room, where it was suggested we do the same again next year, with a further suggestion that the same be done in other areas, so it was agreed in principle. Then away to lobby the MP’s. I was asked by a couple the reason for the prison suit, I explained, and took the chance to recite Prisoner Cell Block ME. “Two more people informed”, I thought as they thanked me.

I had Simon’s submission with me to give to Yvette Cooper. Then the word came, “Tony Wright is in the committee room, can you get it back to Simon“. Once again the prisoner cut quite a dash running through Parliament to make the delivery, to more bemused looks from officials and visitors. Tony, who was talking to the group about the problems of letting too many groups speak, and setting a precedence. Then it was time to meet Yvette. I talked with her about the need for a properly structured ME Society. Yvette picked out what could be a few failings, my reply was, that the members will decide and be ultimately responsible, and it is them to whom any salaried staff will be ultimately accountable. Later we all said our goodbyes, it was hard trying to say thank you to everyone, we all agreed it had been worthwhile, and we should go for it again. I can’t describe the feeling of achievement I felt at the thanks I received, but did state that a cavalry officer is no good without any troops behind him. One man had arranged it but others had followed, others had made it the success it was.

This is my story of a day that went well, others will have their stories and hopefully will tell them and next year, the first of the few will perhaps become the first of many more. Or as one of the demonstrators has since said. “why wait ‘till next year?” Let’s get the ideas into a hat, draw them out and put them into practise. John Edmonds has said he will help us. I think he will. Somebody once said that the ME Community has an enemy within, the people who can write such wonderful articles, but are yet scared to publish them, and there are those that can talk a good campaign. We all have something we can give, we all have in someway, a talent we can use. Now is the time to use it, now is the time to look at what has been achieved and build on it, now is the time to encourage, now is the time to move forward, we have the internet, we have telephones, we have the mail service, we have people willing to help us. All we need to say now is “We Will. It is a long time ‘til May 12th next year, why wait, answers by any means possible.”




Pathways Postbag

Dru Writes: I started with M.E. after an adverse reaction to Hepatitis B Vaccine. Have any other members suffered similarly ? Is there anybody out there who works or has worked in the police force, NHS, as a dental practitioner, or anyone who has had the Hepatitis B Vaccine and is now suffering from ME, Chronic Fatigue Syndrome or any other illness as a result of having the vaccine? If so, then we would like to hear from you. We are investigating the possibility of bringing a claim against those legally responsible for causing people to suffer adverse reactions after having the Hepatitis B injection. We would therefore like to hear from you as soon as possible. Contacts are Ann & Colin Savage, H.B. Support Group, 01329 847588. The solicitors Mervyn Fudge & Clarke Willmott Solicitors, 1 Georges Square, Bath Street, Bristol, BS1 6BA, 0117 941 6600.

Anne Writes: I write to inform readers about the terrible injustice that I have just had to endure, when I was visited by a doctor for my Disability Living Allowance (D.L.A.) claim. Dr. ****** was sent out by the D.L.A. and is solely responsible for me being turned down for renewal of D.L.A. On his visit to my home he came across as a very caring and courteous person. However my claim was refused despite me have been awarded D.L.A. before and my medical condition being unchanged. We have since received a copy of his report from the D.L.A. and we have found that he has added bits to the form after he left the house, which were very discriminating and totally untrue. Despite me using a wheelchair, one of the things he said was that I could walk eight hundred yards in nine and a half minutes. In truth he is not sympathetic at all towards M.E. and I would advise any other sufferer not to allow him into the house, and to request another G.P. to carry out the examination.
Agreed. Dr. ****** (we can‘t publish his name on legal advice) is quite well known to me. He was sent to examine me for D.L.A. several years ago. During his visit it was quite clear that he was very arrogant, trying to write on the form things that were not correct and was told to leave my house. I am aware of at least five similar cases to yours where he is implicated in similar circumstances. I strongly recommend that you contact Bryan Ashworth of the Orchard Centre (01902 494717), and follow the appeals procedure. If you win, you have a very strong case for complaint against Dr ******, and at that point we can take some action against him. In the meantime anyone who is having a visiting D.W.P doctor can contact me on the group helpline (01302 787353) for advice. Mike


Group Contacts:
Chairman:
Mike Valentine, 10 Thellusson Ave, Scawsby, Doncaster, DN5 8QN. (01302) 787353.
mike @leger.me.uk.

The Leeds Charonic Fatigue Clinic
(Originally published in the Leeds & District M.E. Group Newletter, July 03)

The Leeds Chronic Fatigue Service is based mainly at Seacroft Hospital, York Road, Leeds, LS14 I6UH. The Staff for the service are headed by Dr Philip Stanley, Consultant in Infectious Diseases and Dr Hiroko Akagi, Consultant Liaison Psychiatrist. Dr Islip (Clinical Assistant) has left the service and has not been replaced. Dr Stanley's secretary is on 0113 264 8164 (ask for Dr Stanley's secretary) and the Occupational Therapists (OTs) are on 0113 206 2141. Email: cfs_service.seacroft@leedsth.nhs.uk. Maureen is the full-time secretary and receptionist for the outpatient clinic. Sue Pemberton is the Clinical Services Manager. She is the overall manager of liaison psychiatry and is also an OT devoting one day per week to seeing patients in order to keep down waiting lists. During the maternity leave of two of the longer standing OTs (approx. June - December 2003), Sue will be increasing her OT sessions in the clinic to 3 days per week. There will also be two new OTs, Hilary and Edward, each doing one day per week, and there are plans to recruit an additional full time OT. There are four main OTs in the service: Firslty there is Miranda Thew, who is the Clinical Team Manager and the person to whom complaints about the service should be directed. (In her absence complaints should be directed to Sue Pemberton). The other members of the team are Angela Murphy - full-time OT, Ruth Howe - full-time OT, and Suzanne Henshall- full-time OT. New to the service are Wilma Patten - part-time Dietician (long waiting time Social Worker) and Sue Talbot a part time social worker (currently only available for in-patients). The other team members are Avril Mulligan - physiotherapist and Suzanne Moore - a CBT -trained nurse.

There is an in-patient facility (usually short stay) as well as an outpatient clinic at Seacroft Hospital. There are also two beds available on Ward 40, a patient liaison psychiatry ward based at the Leeds General Infirmary (LGI). The Leeds & District ME Group helpline contacts have written testimonials from patients who have been helped by their in-patient stays on the ward.

The Patients - who is this service for?

The service IS primarily for adults but adolescents aged 14/15 can sometimes be seen.
Referral should always be by a Paediatrician, as the clinic is not officially for youngsters of this age, but unfortunately, there is no specialist adolescent child clinic in the area. The outpatient facilities are obviously for those who are well enough to travel to attend. More severely affected patients might need to be treated as in patients. Some severely affected patients may be to ill to come into hospital and indeed the hospital environment may not be physically suitable for them,
especially for those with severe MCS (Multiple Chemical Sensitivities). Any such concerns should be discussed with the staff at the clinic. At present the referral rate to the clinic continues to be high. Approximately 50% of referrals come from "out of area” i.e. not from Leeds. The waiting lists are better than in previous years but still not ideal.

Unfortunately a number of patients are failing to turn up for appointments without giving any prior notice or explanation. This is really not fair to a service which is over-stretched or to the patients on the waiting lists. Whilst it is appreciated that CFS/ME is a fluctuating illness and it is often difficult to predict how you will feel, last minute cancellations and unexplained non-attendance should be avoided where possible.

Patients can be referred to the service in one of two ways. They can be referred to Dr Stanley for assessment etc., in the normal way; this is especially important where there is some doubt about diagnosis. Alternatively, patients can be referred directly to the OTs by their GP (this is called 'triage').

The Therapy

All patients referred to the clinic are assessed by the OTs to ascertain which therapy option might be the most appropriate. The therapy is based on 'pacing’ (NOT on graded exercise!), principles of Cognitive Behavioural Therapy (CBT), effective illness management, graded activity, goal setting to build activity tolerance, and anxiety/stress management. Techniques for improving memory, concentration and assertiveness are also taught. There are
therapy options:
1) The group course - 8 weekly sessions in a group of about 9 patients. The sessions last for one and a half hours each, and are at the same time and on the same day each week. Three months after the end of the course, the group has a follow-up session with the OT to discuss the problems and benefits of putting the pacing techniques etc. into practise.
2) Individual therapy - between 6 and 8 one-to-one sessions. These tend to be offered to patients who have multiple or specific problems which may be better addressed one-to-one than in a group context. The waiting list for these is long.
3) Individual 'brief advice' sessions - these are offered to those who are coping well or whose understanding and knowledge about the condition are good. There is no waiting list for these.
Each patient is allowed two further sessions each year with an OT to iron out any problems which may have arisen. These may include benefit or work problems. They are also given the direct telephone line to the OTs for brief advice etc. The OTs can do home visits where requested by a doctor, but these are very time-consuming so they probably don't do as many as would be desirable, though they have been out to patients in Keighley and Harrogate when required. They also do a lot of telephone support and advice for existing patients whom they already know. Unfortunately none of the doctors at the clinic routinely offer home (domiciliary) visits to patients. NB. Between June and December 2003 there will be a restricted/reduced service at the clinic due to two OTs taking maternity leave. It is likely that the service will be unable to honour the two annual 'top-up sessions' it routinely offers to current and previous patients during this time. There may also be longer waiting lists.

Comment
As we do not have a clinic in Doncaster, we strongly recommend the The Leeds Facility to our the members because they:
1) Provide a 'tablet of stone' CFS diagnosis and exclude the other diseases that may mimic CFS.
2) Check for other undiagnosed medical conditions.
3) Do a mental health screen to check for suicidal tendencies and depression, identify and treat as necessary (these are as high as 30% of their patients).
4) Teach pacing techniques. They are good at dealing with the mental health problems associated with M.E, but not the physical ones.
They have found some M.E. cases misdiagnosed by G.P.s and found it to be rare connective tissue disorders, SLE, diabetes, mycoplasma, reckettsia, lyme disease, cancer etc. The diagnosis from Dr. Stanley's clinic makes disbelieving G.P.s sit up and take notice. It also stops difficulties with the DWP regarding incapacity benefit, insurance issues and early retirement. It does not seem to help with DLA.
What they don't do is:
1) Deal with G.I. tract issues e.g. IBS, Candida.
2) Deal with allergies, sensitivities.
3) Deal with US style non NHS treatments e.g. EPD, B12 injections.
4) Deal with HPA axis issues treatment. e.g. Thyroxine, Hydrocortisone.
Most people within our group find the first 18-24 months useful, but then they find that they've gone through the system, and then seek private treatment.
Treating M.E. with Vitamin D by Dr. S Myhill.

An interesting paper from Germany is about a Dr Hock's experience of using high dose vitamin D in conjunction with multiminerals for treating CFS. She describes the sort of symptoms which would indicate a beneficial outcome with giving vitamin D. For example: Sufferers tend to be worse in winter and better in summer (because sunshine on the skin greatly increases vitamin D levels). Vitamin D has dual effects on the immune system, partly stimulating, partly modulating. On the one hand vitamin D deficiency causes immune suppression with greater risk of getting recurrent infections, but on the other hand deficiency makes the immune system more sensitive tending to increase the likelihood of allergies or chemical sensitivity. Vitamin D has a similar dual effect on nervous tissues, with on the one hand deficiencies causing excitation, restlessness and sleep disturbance, and on the other hand upsetting highly energy dependant functions, such as attention, concentration, understanding and memory. This is a really interesting combination of symptoms because I see this so commonly in my CFS patients - this odd combination of feeling restless and almost panicky but at the same time fatigued. Early symptoms of vitamin D deficiency include fatigue, diffuse muscle and deep bone pain parasthesia, muscle cramps, gait changes and difficulty in ascending a staircase and carrying loads. Again these are common symptoms in CFS. Low levels of vitamin D causes weakness of the muscles, including muscles of the heart and poor energy supply. Sounds familiar? People who are regularly exposed to sunshine throughout their lives reduce their overall risk of cancer by 250%.

Dr Hock's treatment of CFS is very similar to my own - she also addresses all the basic principles with attention to sleep, diet, rest and pacing, chemical clean up and replacement of micronutrients. She also routinely checks for thyroid problems, B12 deficiencies as well as other hormone imbalances and toxic stress. Routinely starts all patients on high dose vitamin D. It is her opinion that everybody living in sun deficient areas during winter months is vitamin D deficient - indeed, in Germany rickets is called the English disease! It is not that CFS patients have rickets, but mild subclinical vitamin D deficiency.

Humans evolved in hot climates running naked under the sun. Black Africans run vitamin D levels of 150 pmols/l or above. Normal levels in Britain is said to be 40-125 but this almost certainly represents an underdose. Some of my ME patients have levels below 10! Vitamin D is made through the action of sunshine on cholesterol under the skin. So, if there is a deficiency the body perceives this and responds by increasing cholesterol levels so more is available when sunshine does arrive. So, the side effects of sunshine deficiency are high cholesterol, osteoporosis, chronic fatigue, and incidentally heart disease and cancer! Sound familiar?

The best source of vitamin D is sunshine on the skin. Although the RDA is set at 400i.u. this is far too low and the likely correct RDA is probably between 2,000- 4,000 i. u. daily. It has been calculated that to get optimum amounts of vitamin D you need one quarter of the exposure necessary to cause redness on the hands, face and arms three times a week. If you cause redness you are risking skin cancer. One hour's full body exposure on a Caucasian provides 10,000i.u. of vitamin D. Darker skins need more light. In the summer this is easily possible to achieve - vitamin D is well stored in the body and more on one day will compensate for less on another. The problem for my ME patients is that many do not tolerate sunshine because they get too hot. Some have true light sensitivity and symptoms are worsened by sunlight. It may be possible to gradually increase the area of skin exposed to sunshine and the length of time. Vitamin C by mouth is very protective against burning. It is burning which increases your risk of skin cancer! Studies on people exposed to sunshine indeed show that they have an increased risk of skin cancer, but their overall risk of cancer is reduced by 250%! During the winter months when there is insufficient sunshine, either use a sunbed, or a winter holiday or take vitaminD. I would suggest taking 2,000 - 4,000i.u. cholecalciferol daily. Cod liver oil contains 5mcg of cholecalciferol per 500mgs of oil. So this is almost useless in correcting vitamin D levels.

All CFS/ME patients are at risk of osteoporosis because they are unable to exercise. Vitamin D is highly protective against osteoporosis and all sufferers should make a particular point of getting regular sunshine exposure, or using a sunbed or take a vitamin D supplement.

South Yorkshire CFS/ME Services bid.

Jan Appelbee is the NHS manager charged to commission CFS/ME services within South Yorkshire, and is acting on behalf of the Doncaster Primary Care Trusts (PCTs). The bid for a Sheffield Centre has been accepted. Now Jan is bidding for an extension to cover Doncaster, Rotherham and Barnsley. We have been asked for a letter of support and comment. The new service will support M.E., PVFS, CFS, and FMS. Our submission is as follows:-

1) Firstly, we haven't seen a copy of the bids. We would be grateful if you could forward us a copy, as before we can fully comment we need to see the proposals. We are prepared to give to all the help and co-operation we can.

2) At present there is no coordinated strategy for dealing with fatigue syndromes within the Doncaster area. Patients face a fragmented approach. They are sent to various facilities, either physical or mental-health based. Consequently, the services patients receive is inconsistent.

3) We advise our clients and members that they should have a diagnosis at consultant level in order to secure private and state benefits. As chronic fatigue is a symptom of many other diseases a full health screen should be available to new and existing patients. While many consultants at Doncaster Royal Infirmary are willing to give a diagnosis, there is no follow on support. That is when patients seek our help.

4) Because of the ‘diagnosis and dump’ policy at D.R.I., we advise all our members to ask their G.P. to refer them to the Leeds Chronic Fatigue Clinic at Seacroft Hospital, which is the nearest NHS clinic. There are the usual problems of NHS waiting lists. At Leeds, patients are checked for other diseases and/or given a consultant level diagnosis. There is a full follow up team which include occupational therapists and dedicated beds. Once patients have been seen by Leeds, they are given follow up which include pacing and mental-health strategies. We would expect a similar service locally.

5) We would strongly oppose a psychiatric-led team using Cognitive Behaviour Therapy or Graded Exercises. This is because they are considered dangerous and inappropriate by our medical advisors and sister groups based on past experience.

6) There is an issue in that some doctors believe fatigue syndrome is a form of depression. We would expect any medical staff trained in a facility to be able to recognise the difference. Depression does occur in about 30% of our members’ cases. TCAD antidepressants on a ultra low dose help with symptom control in many patients. Many CFS/ME patients respond adversely to high doses of TCADs and SSRIs.

7) About 18 months to two years after diagnosis patients tend to seek private treatment. This is mainly because there are a number of commonly available medicines (e.g. Vitamin B12, Thyroxine, EPA, hydrocortisone) which modify the disease process, that are not available within the NHS. This is because they are not licensed for use to treat ME/CFS. We would expect any new facility to consider the unorthodox use of these medicines. There are also certain tests available in the private sector e.g. Gut Fermentation and Adrenal Stress Profile which should be available to NHS patients.

8) There are a number of commonly associated complications associated with fatigue syndromes:- gut fermentation, irritable bowel syndrome, depression and other mental health problems which are associated with CFS/ME. We would expect any service to provide the facilities to treat these.

9) As a minimum, we would expect a satellite referral service and specialist nurse for any Doncaster service. If patients were needing to travel to Sheffield, we would be no better off than travelling to Leeds. Some patients are not able to travel great distances.

10) DDMES plans to bid for a Support Worker and Information Officer. We are willing to enter into partnership and to network in order to provide a seamless transfer of care from hospital based care to community care.

11) We believe that certain complementary or alternative therapies known to help CFS/ME should be available within the NHS e.g. Aromatherapy and acupuncture.

12) Many M.E. patients suffer from Multiple Chemical Sensitivity (MCS). We would expect that the standard desensitising treatment be available within the new facility. We would expect that E.P.D. (Enzyme Potentiated Desensitisation) and 'Neutralisation' be available within the NHS service. We would also expect that emergency treatments e.g. Epipen, Antihistamines and steroids be available.

BOOK REVIEW

“Treat Yourself with Nutritional Therapy” by Linda Lazarides ISBN 0-9538046-3-1
Published (2002) by Waterfall 2000, BCM Waterfall, LONDON, WC1N 3XX
Price £15.99

The author of eight books including “The Nutritional Health Bible” and founder of The Society for the Promotion of Nutritional Therapy, Linda Lazarides ran a successful nutrition clinic within a doctor’s surgery for a number of years. This book is crammed full of her valuable knowledge and experience. It is a practical guide to optimising the working of body systems through nutritional intervention.

Readers are offered three short questionnaires through which they can assess their personal health. Nutritional deficiencies, food intolerances, Candidiasis (dysbiosis) and liver overload are some of the subjects discussed. An A to Z list of health problems includes Chronic Fatigue Syndrome and Fibromyalgia, for which specific advice is given.

There is guidance on food preparation, including the use of unusual substitute foods. Over a hundred gourmet recipes (mostly vegetarian and originally published in “The Nutritional Therapy Cookbook”) avoid wheat, dairy, yeast, eggs, additives, sugar, animal fat and salt. Appendices include useful nutrition tables.

A resources section gives suggestions for further reading, useful websites, nutritional suppliers, access to practitioners and training organisations. The book is comprehensively referenced and well indexed. People are understandably confused by opposing views on the safety and effectiveness of nutritional therapy. Linda Lazarides addresses such issues with clarity and wisdom. I thoroughly recommend her book. Elizabeth McDonagh
Herbs That Can Harm. ( Taken from “Hope 4 M.E.”, Rotherham Group’s Newsletter )

With the popularity and increase in the use of herbal supplements, more people are endangering their lives without ever knowing it. Before you take some of these herbal products, you have to be sure that it will not do you more harm than good. Some supplements have lethal interactions with other medications that you may already be taking. Following recent research, many so called "harmless herbs" have been found to give side effects that are worse than the original complaint that led to trying these remedies. Here are some Examples:-

GINSENG - used to boost energy. Do not take this herb with any heart or blood pressure medication or if you are on any blood thinning medication (e.g. warfarin), In addition, do not mix Ginseng with caffeine as it may result in irritability. Ginseng can lower blood sugar therefore diabetics or people who suffer from unstable blood sugar levels should avoid this potent drug.

This substance has the potential to make fatigue worse.

KAVA KAVA - used as an anti-anxiety medicine . Do not mix this with alcohol, medications for Parkinson's disease, anti-psychotics, sedatives or sleeping pills. Kava can exacerbate the effects of drugs that depress the central nervous system, causing excess sedation as well as tremors, muscle spasms or abnormal movements. Do not mix this potent drug with any other anti-anxiety drug including St Johns Wort. Also avoid this supplement if you have a family history of stroke, high blood pressure or diabetes. Taken in excess amounts this supplement may cause liver failure.

The Committee on the Safety of medicines have effectively banned this for medicinal use.

ECHINACEA - an immune stimulant commonly used to keep the common cold at bay. It should not be mixed with corticosteroids, which work to suppress the immune response that causes illness. This supplement should be avoided at all costs by people who have Lupus, AIDS, TB, MS, or any other autoimmune related diseases.

This should be avoided at all costs by people with Chemical sensitivity.

ST JOHNS WORT - an antidepressant supplement. This drug may cause photosensitivity so be careful not to take it with any other drug that also has this type of side effect, e.g. certain antibiotics etc. There is also reason to be concerned that anti-seizure medications and other antidepressants like Kava-Kava do not mix well with this herbal supplement. It may reduce the effectiveness of some asthma medications so do not take it if you have asthma.

This substance reacts with so many conventional medicines than really it is only safe to use providing no other medication is taken.

VALERIAN - used to aid sleep . Do not take this drug if you are on any anti-anxiety or anti depressant medication. Also do not take Valerian with any other drugs containing antihistamines (for allergies or skin rashes). Do not use with alcohol, sedatives or sleeping pills because it may result in extreme drowsiness.

FINALLY - Always inform your GP that you are taking supplements before he/she issues a prescription for other drugs. Because of the well-researched side effects of many supplements, it is only fair that your GP has all information to hand before diagnosing or treating any condition.

I have got all the details about herbs and drugs. Contact me on the helpline (01302) 787353 if you need any further information. Mike.

Pathways Postbag.

1 In your recent press release ‘Florence Nightingale was struck down by a mysterious illness after returning from the Crimea.... She never recovered her former health. The illness she suffered from was very similar to what we know as M.E. today’. It is believed she had carbon monoxide poisoning from the stoves used in the Crimea! Dr. Sarah Myhill

1 I have recently been to a Fybromyalgia Group Meeting. I’ve brought some of the literature for your Group Library. Anne

Many thanks for the information Anne. I’ve had a look and there is a lot of useful and interesting information which we would like to publish at some point. Meanwhile if anyone would like to see them please contact myself or Doris. Mike

1 Doncaster Carers Forum is organising a number of events for carers during Carers Week (14th -19th June) to celebrate the significant contribution they make to the local community and to raise the profile of Carers. We are working in partnership with colleagues in the statutory sector to launch the Carers Week. This event will take place on Monday 14th June at the Doncaster Mansion House 10 a.m. -1 p.m. with a buffet lunch included. If a member of DDMES would like to attend this event and/or put a question to the panel, please let me know ASAP. Unfortunately, it may not be possible for all questions to be put forward to the panel and a selection process may be necessary. If your question is selected you will be contacted before the event. Questions not selected will be sent for the panel to respond to appropriately after the event. Bernard Rounthwaite

Bernard is Chairman of Doncaster Carers Forum. He can be contacted in the Lansdowne Centre on 341240. Alternatively, contact Janet Budden on 311700.

1 I have temperature control problems. I was diagnosed with CFS/ME almost two years ago.
I am making very slow progress towards recovery, mainly by using complementary therapies and nutritional supplements. However, I suffer from frequent cool sweats around my forehead and eyes, which are often triggered by the mildest activity and which do not respond to any sort of treatment. Does anyone else have any experience of reducing the incidence of cool sweats, or know of any reference material that is available? All the books that I have read make only passing reference to this symptom and offer no practical advice on how to deal with it. John

Excessive sweating is hyperhidrosis. The problem you have is cause by autonomic sympathetic dysfunction which is common in M.E. Normally sweat is secreted for its cooling effect when the body overheats or is tense. What you need to do is establish what your body temperature is, and whether it is within the normal range. You can easily do this with a clinical thermometer. If it is higher than normal this indicates that the sweating is normal. If it is below, say, 32-34ºC then it is abnormal, and a symptom of the M.E. The nerves that control sweating are cholinergic in control. This means that they will respond to anticholinergic drugs. Tricyclic antidepressants e.g. Amytriptyline are anticholinergic, and people whose M.E. is treated with this drug do not suffer cold sweats. Hyoscine, a component of some travel sickness tablets, also has this effect. There are a number of topical preparations based on aluminium chloride. These are available on the NHS. Homeopathic strengths of belladonna, stramonium, and hyocyamous do not work.

My advice is that you talk this over with your doctor as excessive sweating can sometimes be caused by other serious diseases, and it is important that your doctor excludes these before you try to treat it. Mike

John, email jsmith@globalnet.co.uk
Doncaster Patient Advice & Liaison Service (PALS)
by Corrinne Cooper, Assistant PALS Co-ordinator who paid us a visit at a recent group meeting.

The Doncaster Primary Care Trusts’ Patient Advice & Liaison Service was introduced in April 2003, in order to 'Shift the Balance of Power' and listen to the patients view of the NHS and NHS services. Every NHS employee is a 'PAL' and should therefore be 'Putting patients at the heart of the NHS'. PALS are there to help them deliver the service and give advice and support to both staff and patients.

What does a PAL do ? We are asked many different things but the most common requests are:-
Names of dentists taking NHS patients.
Information on diseases, conditions and treatments.
How to get help with health costs.
Registering with a local GP.
Rights to treatment.
How to complain about NHS Services.
Help to obtain Prescription Prepayment and Exemption Certificates.
Issues concerning medical cards.

The above are simple everyday queries we receive, but we also deal with more complex issues which can involve more than one service for example Social Services and District Nursing. These issues tend to involve liaison with all concerned in order to resolve the problem and can sometimes take weeks to reach a resolution. All the contacts we receive are monitored and reported to the Trust Boards’ meetings. This in turn informs the Trusts about recurring concerns and highlights areas that need urgent attention. Our aim is to ensure that patients using NHS services do not continually come up against unnecessary barriers. To deliver this service we need every staff member to beware of PALS and what we can do to help both you and your service users. The contact address for your PALS support officer is Health Focus, 13 Colonnades, Doncaster. DN1 3EG. Telephone: (01302) 768550, Fax: (01302) 368160.
E-mail: health.focus@doncastercentralpct.nhs.uk Minicom available.

Introducing The PALS Team
Annis Green - PALS Coordinator overseeing Primary Care PALS in the Doncaster area.
Corrinne Cooper - Assistant PALS Coordinator covering Doncaster East PCT.
Alison Marquis - PALS Support Officer covering Doncaster Central PCT.
Kay Taylor - PALS Support Officer covering Doncaster West PCT.
All the above are based at Health Focus, 13 Colonnades, Doncaster. Tel: (01302) 768550.
There is a drop in service Monday to Friday 9 - 4 and a telephone/answerphone service outside office hours.

Dean Eland, PALS Officer for Doncaster & South Humber NHS Trust, will be available at Health Focus every Tuesday for any help and advice needed about Learning Disabilities & Mental Health Services in the area. Dean can also be contacted by phoning (01302) 796813.


Healthy eating for a healthy person by Dr. S. Myhill

Human beings evolved over millions of years eating particular foods. Neanderthal man was a carnivore and only ever ate meat. More recently Paleolithic man expanded the diet to include root vegetables, fruits, nuts and seeds which he could scavenge from the wild. It is only in the last few thousand years since the Persians, Egyptians and Romans that we began farming when grains and dairy products were introduced into the human diet. A few thousand years from an evolutionary point of view is almost negligible. Many people have simply failed to adapt to cope with grains and dairy products and it is very likely that these foods cause a range of health problems in susceptible people.

Modern studies on ancient tribes who continue to eat a stone age (Palaeolithic) diet show that these people suffer from no diabetes, obesity, heart disease or cancer. If they can survive the ravages of infectious disease, childbirth and war wounds then these people live healthily to a great age. So the secret of a healthy diet which allows one to live to one hundred is to copy what our ancestors ate and also eat a stone age diet. In practical reality this is not easy and some grains and dairy products are bound to come into the diet. I really do not think this matters very much so long as the emphasis is on balance. At present four foods, namely wheat, dairy products, sugar and potato make up 70% of our calories. This artificial restriction of diet means we are likely to be missing out on many essential nutrients which could otherwise benefit us. In addition to choosing the right foods to eat, one can further improve their nourishing value. The first is that ideally these foods should be grown from a soil in which the mineral content has been corrected. Modern farming simply applies three elements, namely NPK (nitrogen phosphorous and potassium), resulting in soils which are grossly out of balance. There is a net loss of minerals such as selenium, zinc, magnesium, cobalt, copper, manganese (to name but a few) from the soil into plants and animals, humans and out into the oceans.

Foods must also be as free from toxins as possible, such as pesticide residues, hormone residues, antibiotic residues etc. To achieve this, buy organic as much as possible. One of the criticisms I have against organic farming is that they do not routinely treat the soil and correct mineral levels. Food which tastes good is likely to be good food. Taste is a sense which is trace element sensitive - i. e. foods which are deficient in trace elements don't taste so good. For example zinc deficiency in children is very common. Zinc is necessary for taste buds to work and so food for these zinc deficient children is tasteless. So they tend to go for salty, sweet or spicy foods to compensate and end up eating junk, thereby worsening the zinc deficiency. Most people can tell you the difference between home grown fresh vegetables and three day old shop vegetables. The true free range chicken is a rare beast but quite different in taste from the factory bird. This food vitality may be difficult to quantify but it makes it no less real! For most people "everything in moderation" applies - so long as the "everything" applies to high quality foods. For the allergics "one man's meat is another's poison". Most people will have to sort out their own diet based on healthy principles (see below).

Low fat diets. As a nation we have been brainwashed into believing that fat is bad for you. This suits the food manufacturers well because fats (except cooking oil and margarine which they have erroneously convinced us have health benefits) are expensive and it is difficult to profit from them. Carbohydrates however can be bought cheap and sold expensive. Potatoes can be bought for £100 per ton sold for £10,000 per ton as crisps. Fat is good for you, it is a case of eating the right sort of fats.

Vegetarianism is not necessarily more healthy. In fact I encourage CFSs not to be vegetarians—vegetarian diets are artificially restricted and so people risk picking up food allergies, their diet is harder work to prepare, they can be less flexible and it is likely to be lower in protein. Proteins are essential in a diet, especially for someone who is ill or stressed. The problem with meat appears to be how we cook it (primitive man would have eaten his meat raw!). Highly cooked fats produce oxidised fats which are full of free radicals which are damaging to arteries and possibly carcinogenic. If you do have highly cooked meats (e.g. roasts and barbecues), make sure you have something with it to neutralise the free radicals, for example, lots of vegetables. Meat which is boiled (stews, soups) do not contain oxidised fats.
General Principles:- Drink good quality water. Spring water (direct or bottled) is undoubtedly the best. Second best is filtered water (water filters should be changed regularly), with tap water a poor third. Many drinks (tea, coffee, alcohol, pop) contain substances which are diuretic and make you pee out minerals.

Have as varied a diet as possible—everything in moderation is the key. Eat at least 8oz of green vegetables and three pieces of fruit daily. Don't forget nuts and seeds—these are one of the richest sources of trace elements and vitamins—have 2oz daily. Margarine is bad for you. It is artificially prepared by heating oils to high temperatures. This causes formation of trans fatty acids, which are poorly metabolised in the body. Margarine has no "health" advantages over butter. Use best quality "cold pressed, virgin" olive oil for cooking and salads. Other oils have often been heated and therefore denatured. The mono-unsaturated fats are thought to be best in protecting against heart disease.

Sugar has no nutritional value but is highly addictive. Avoid it. Tea, coffee and cocoa are natural chelating agents and will bind to trace elements so blocking their absorption. Tea is the main cause of iron deficiency anaemia in the country. Drink these beverages between meals (not with food). Avoid refined flours, for example white flour has been stripped of the outer layer which contains most of the nutrients and fibre. Fruit juice will enhance absorption of trace elements because of its vitamin C content, so drink this at mealtimes. Don't eat excessive amounts of dairy products. Our physiological requirements of calcium:magnesium is in the ratio 2:1. Dairy products contain 10:1 and since these elements compete for absorption, excessive consumption of dairy will result in a relative magnesium deficiency.

As soon as something "dies" it rots and loses its goodness. So avoid such "dead" foods as those in tins and packets. Buy fresh, "alive" foods. The only exception is frozen meat, and possibly fish, which is not destroyed by freezing. Eat meat which has "had a life". The fatty acid content of factory farmed fish, pork and poultry reflects that of the food it eats—i. e. poor quality. Eat free range—lamb and beef probably offer the best value in this country. There is a myth that chicken is a healthy meat - if one could see the conditions under which chickens are kept and the quality of food they eat one would understand why chicken is a low quality food. Use Solo which is sea salt for which the sodium content has been reduced and so is much closer to our physiological requirements than table salt (sodium chloride). Alcohol in modest amounts is not bad for you, unless of course you have an intolerance (most people with CFS cannot tolerate alcohol).

Our Western diet is relatively deficient in omega 3 fatty acids—eat oily fish twice weekly and/or use linseed in muesli. Cook foods lightly. Vegetables which are boiled to death lose most of their trace elements in the water. Or if you like your vegetables done this way then you should drink the cooking water (or use it in the gravy). Burned fat from cooking meat is carcinogenic. Eat foods as unprepared as possible—raw foods are excellent. As a general principle, proteins and fats are more sustaining, carbohydrates are stupifying. I recommend eating protein and fats at breakfast and carbohydrates in the evening. Breakfast like an emperor, lunch like a king, supper like a pauper! This is especially important for people suffering from fatigue.
E.g. Breakfast:- protein/fat (eggs, meat, fruit) Lunch:- meat, fish, cheese, vegetables, fruit, nuts. Supper: carbohydrates (potato, root vegetables, pulses) lots of vegetables, salad, nuts, seeds, fruit, dried fruit etc.

Whitehall Stopped for ME. (By Trevor Wainwright)

Yes it did, for the presentation party to 10 Downing Street on May 12th, the second Official ME Awareness Demonstration. Waiting to go to Downing Street was the MEA Petition to which further sheets were added. In just six weeks it totalled 29,000. More banners were on show this year, quite a diversity, each one with an equally important message, there was also an extra prisoner this year, as Jeanette my colleague donned a grey prison suit, with me in my now familiar beige one, the one I began to use in 1999. Cameras clicked, videos rolled as the demonstrators talked to each other. Two groups were actually doing documentaries, and no doubt got some good footage as interview after interview took place, the true story being told, by those who knew it all too well.

1.00 p.m. Whitehall stopped to allow us to cross to Downing Street. Myself and many others, each of us with an important presentation. Presentations over it was more photo calls, then Whitehall stopped once more as we went back to the DoH.

1.30 p.m. A slow walk to the House of Commons, again banners carried, public made aware, after a slight delay we finally got in and were shown to the committee room, then it was to find the MPs. We decided to find some of our supporters from the House of Lords, The Countess of Mar was easily found while Baroness Golding proved somewhat elusive. It was while we were there that my own MP Yvette Cooper found us. We talked for a while, then she had to go to vote on an important issue. So, it was back to the committee room to find Tony Wright engaged in full debate with the demonstrators, question after question, many thought he did not answer them fully, but come the division bell, he did not dash off but hung on until the last possible moment. Then came the Countess of Mar, direct and to the point. The demonstrators really warmed to her, all getting the feeling she was doing something positive.

While this was going on, three representatives from the MEA were talking to the Shadow Health Secretary. Other demonstrators had also contacted their MPs, one of whom was a Member of the APPG and saw no reason why any group should not be allowed to address the APPG. This would be noted and hopefully used at a later date.

4.30 p.m. The meeting was interrupted by another group asking "what are you doing here?" some 1922 committee or something, anyway by then the meeting had achieved its purpose. We had said what we felt to those who purport to represent us. So goodbyes said and final photos taken, it was homeward bound.

Are we back next year? I see no reason why not, and having published my story, I see no reason why the other attendees should not publicise their story. My thanks to all who attended, and those that would have loved to have been there in body but were there in spirit.

From Doncaster Free Press 13th May 2004

FLORENCE Nightingale was struck down by a mysterious illness after returning from the Crimea. Although she made many a pioneering breakthrough in nursing, most of her work was done from her sick bed. She never recovered her former health. The illness she suffered from was very similar to what we know as ME. today.
ME Week is always chosen to include her birthday, May 12th, and for that week Doncaster and District ME Support has a display in the window of the Health Focus shop, The Colonnades, Doncaster. Members of DDMES will be available to speak to callers between 1pm and 3pm at the shop. DDMES has an information line (01302) 787353 which will be open 2pm - 3pm and 7pm - 8pm during ME week. An information pack and a free newsletter are available. DDMES also has a Website www.leger.me.uk.

ME (Myalgic Encephalomyelitis/Encephalopathy) is a chronic, fluctuating illness. It is also known as Chronic Fatigue Syndrome (CFS). Sometimes it is diagnosed as Post Viral Fatigue Syndrome (PVFS). The illness affects many parts of the body, such as the nervous and immune systems. The most common symptoms are severe fatigue or exhaustion, problems with memory and concentration and muscle pain.

It is estimated that there are up to 240,000 people with ME in the UK. It can affect men, women and children of all ages and from all social and ethnic groups. It seems to be more common to develop the illness between the early twenties and mid-forties. There is no cure or effective treatment. At present there is no dedicated NHS support in Doncaster, although bids are in progress to improve the service.



BOOK REVIEW: ‘SKEWED’ by Elizabeth McDonagh

“SKEWED—PSYCHIATRIC HEGEMONY AND THE MANUFACTURE OF MENTAL ILLNESS IN MULTIPLE CHEMICAL SENSITIVITY, GULF WAR SYNDROME, MYALGIC ENCEPHALOMYELITIS AND CHRONIC FATIGUE SYNDROME.” by Martin J Walker : Slingshot Publications 2003 ISBN 0 9519646 4X Paperback 284 pp Foreword by Per Dalen MD, PhD, Associate Professor of Psychiatry, University of Gothenburg, Sweden.

In “Skewed”, Martin Walker takes a penetrating look at the “emerging illnesses” viz Multiple Chemical Sensitivity (MCS), Gulf War Syndrome (GWS), Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). He presents a number of case studies illustrating how patients suffer under a psychiatric paradigm which deems clinical investigations of their problems unnecessary and may deprive them of disability pensions and insurance payments.

Ean Proctor from the Isle of Man became seriously ill in 1986. For ten months he attended a local hospital (where the doctors suspected “school phobia”) and the Royal Liverpool Children’s Hospital. Eventually his parents took Ean to the National Hospital for Nervous Diseases in London, where he was diagnosed with ME. Ean was assessed by Dr Simon Wesseley and psychiatrists at Great Ormond Street Hospital, who believed that Ean’s parents were responsible for his illness, having imposed false illness beliefs on him.

When the family returned home, the Isle of Man Child Care Department forcibly removed Ean to the local hospital and allowed his parents very limited access. Ean was subjected to a series of experimental treatments without their knowledge or consent. At one point this paralysed and terrified child was thrown into a swimming pool in the false belief that he would be shocked out of his presumed imaginary illness.

Eventually, Ean was allowed home and a Petition for Redress of Grievance was placed before the IOM Parliament (the Tynwald). The family were vindicated but its members received no compensation for their sufferings which had affected them physically, emotionally and socially and had brought them near to financial ruin.

During the ensuing years, Dr Wesseley has become a world expert on the ‘psychiatric‘ causes of causes of CFS/ME, involved in research teams which have attracted hundreds of thousands of pounds in grants. Influenced by this research, many doctors now believe that CFS/ME is a psychological illness and that anti-depressant medication and Cognitive Behavioural Therapy (an attempt to change false beliefs of illness) are safe and effective treatments.

Patients are becoming increasingly frustrated and vociferous in their opposition to this viewpoint. They claim that CBT and anti-depressant drugs actually do harm. They point out that researchers world wide have found clinical evidence of abnormalities in immune, endocrine and circulatory systems, as well as vitamin and mineral imbalances in these patients. Biochemists, nutritionists and a group of doctors calling themselves clinical ecologists are convinced of an environmental cause for these illnesses, and offer a completely different approach to treatment based on rest, detoxification and diet. Walker searches for explanations as to how the psychiatric viewpoint has gained ascendancy. The tendency now is for a number of unexplained illnesses to be labelled as somatization (conversion of emotional states into physical symptoms). This is a relatively new development and has been accepted without scientific evidence or philosophical debate.

The book has a comprehensive index and offers useful lists of relevant organisations, web-sites, scientific papers, official reports and books. Single copies of “Skewed” cost £14.40 including postage and packing from:-Slingshot Publications, BM Box 8314, LONDON WC1N 3XX.
Chronic fatigue care is to get a boost with New Centres and local support teams are to be set up to treat people with Chronic Fatigue Syndrome.
See the full story on page 2


Steve West. Sadly Steve died of cancer on 29th January at the early age of 52. He was Secretary of our group then ‘MEDALS’ from 1993 to 1997. He was a carer for several members of the group and very enthusiastic to help in any way he could. He leaves a widow Diane and son Malcolm to whom we extend our heartfelt sympathy.

The Latest News on Fluoridation by Elizabeth McDonagh.

"Fluoridation [is] the addition of fluoride to the water supply as a means of reducing the incidence of dental caries (tooth decay)." B.M.A. Family Health Encyclopædia. There is currently no added fluoride in water supplied by Yorkshire Water Services Ltd. As the 1985 Water Act allowed, the Company (in 1995) refused to fluoridate when requested to do so by health authorities. The reasons given (April 1995) were that the Government was not prepared to offer an indemnity acceptable to the Company to cover the risks involved; that fluoride does not enhance drinking water quality and that there would be an increased danger of water supplies being rendered unfit for consumption.

In Autumn 2003, after lengthy debates in the Lords and the Commons, and in the face of much opposition, Parliament voted in favour of a new Water Bill which will remove a water company’s right to refuse health authority requests to fluoridate in future. People with ME will be very concerned at the Government’s decision to extend fluoridation schemes. There are nowadays many sources of fluoride in the environment. Tea and fish skin are the main dietary sources along with pesticide residues in food. Further exposure can come from dental treatments, toothpaste, toiletries, medicines, anaesthetics and air pollution. Fluoride is a poisonous substance, its toxicity somewhere between that of lead and arsenic. The late Dr George Waldbott, an American allergy specialist listed the symptoms of chronic fluoride toxicity syndrome which are virtually identical to the symptoms experienced by ME patients.

My view is that fluoridation is enforced medication of a population via the water supply. The hexafluorosilicic acid used in fluoridation is quite different from the less soluble calcium fluoride found naturally in some waters and has never been subject either to safety testing as a medicine or to environmental impact assessment. The National Pure Water Association (NPWA) is currently running a postcard campaign emphasising that fluoridation is in breach of human rights legislation. Under the Council of Europe’s Biomedicine Convention each individual has the right to refuse medication or to withdraw their consent to it at any time. NPWA has an interesting website www.npwa.freeserve.co.uk. The telephone number is (01226) 360909. If there is sufficient interest in fluoridation I would be willing to hold a little seminar for DDMES members at my house. Please contact me on (01302) 785542.

Comment. Have the anti-Fluoridation movement got it right ? If there were the dental equivalent of the Spanish Inquisition then this feature would be heresy! Most dentists I’ve talked to are 100% in favour of fluoridation. Some time ago I was given fluoride treatment by my dentist which increased my levels of fatigue. I have found a case quoted on the internet of dental fluorosis in a young girl. This is a 13 year old with developmental fluorosis, typically caused by the child swallowing its toothpaste prior to age 3, giving too much fluoride in the system. Teeth have prominent white spots. More severe cases may have stained and pitted teeth (see above). In this case treatment with a general anaesthetic was needed to correct the problem. I’ve printed the photograph. Judge for yourself – Mike.



Leger ME Feedback Survey 2004.

This survey is essential for improving our existing services, providing new services and persuading funders to fund our services. Please help us to help you by providing answers about THE M.E. SUFFERER. Answers are in complete confidence. For assistance telephone (01302) 787353.

Year of Birth: Male/Female Single/Married/Divorced/Separated/Widowed/Minor

Year of first ill health: Year of first ‘fatigue’ diagnosis:

Diagnosis: M.E. / C.F.S. / P.V.F.S. / F.M.S. / Other

Given by: G.P. / Consultant / Hospital Clinic / M.E. Clinic / Other

Any other co-existing major health problem? Yes / No

State of illness now is:
Acute on set / Chronic / Recovering / Improving / Rehabilitation / Fully Recovered

Source of Care:
Hospital / Private Doctor / NHS Doctor / Therapist / Alternative / Other

Type of Care: Drugs (Pain Killers) / Drugs (Antidepressant) / Drugs (Other) / Herbs / Alternative

What is your Mobility Limit Unaided?
Bed / Bedroom / Home / Garden / Street / Locally / Town / Unlimited

Do you use a Mobility Aid? None / Stick / Scooter / Wheelchair / Car /Other

Do you need help with Personal Care?
None / Occasionally / Sometimes / Most of the Time / Always / Cooking Main Meal

Are you able to Work to earn money? Not at All / A Few Hours / Part Time / Full Time

Do you have your own Income? Private Pension / Work Pension / Wages / Family

Do you receive State Benefits?
Incapacity Benefit / SDA / DLA (Care) / DLA (Mobility) / Jobseekers / Income Support / Other

Do you attend Group Meetings? Yes / No If No, Why?
Day Wrong / Time Wrong / Venue Wrong / Irrelevant / Transport Problems / Too Far Away / Too ill

Please grade the quality of the following services on a scale of 1 to 5 by circling your preference, if you have not used the service circle N/A: 1 = Lowest 3 = Average 5 = Highest
(a) Group Meetings 1 2 3 4 5 N/A
(b) Social Events 1 2 3 4 5 N/A
(c) Newsletter (The Pathways) 1 2 3 4 5 N/A
(d) Information Materials 1 2 3 4 5 N/A
(e) Helpline / Enquiry Line 1 2 3 4 5 N/A
(f) Website 1 2 3 4 5 N/A

What other types of services would you like us to provide? ______


Is there anything we should know about or can help you with?

_______________________________


Where did you hear about this Group? ____________________

______________________________________________________________________________________

From the BBC Website:
Chronic fatigue care is to get a boost with New Centres and local support teams are to be set up to treat people with Chronic Fatigue Syndrome.

In total 12 centres will be set up around the country, using £8.5m announced by the government last year. In addition, 28 support teams will provide specialist rehab programmes and home care services. The New Centres are: Newcastle, Leeds, Liverpool, Manchester, Sheffield, Birmingham, East Midlands, East Anglia, North London, Sutton, Surrey, Bath/Bristol, and Cornwall/Devon. The New Centres will offer specialist assessment, diagnosis and advice on treating the condition. They will also support research into Chronic Fatigue Syndrome, also known as ME, and help to raise awareness of the condition among health professionals.

Health Minister Stephen Ladyman said:- "CFS/ME is a debilitating and distressing condition that affects people of all ages. As the causes are still not fully understood, it is also a condition that poses a challenge to medicine and the NHS. These new centres and local teams mean that we can start developing focused, local services that will make a real difference to people's lives. The support, empathy and understanding of health professionals is an important factor in the care of people with this condition. The education and training provided by the centres will be invaluable in providing health professionals with the information they need to help their patients."

Chris Clark, Chief Executive of the charity Action for ME welcomed the initiative. He said: "People with CFS/ME not only know that their illness has been recognised, but that they can now hope for the support, knowledge and understanding that its severity merits. We look forward to the start of the centres and to the local teams that will follow. They will bring much needed professional advice and support to those in the front line of NHS care. CFS/ME is thought to cost the UK around £3.6 bn a year in medical treatments, lost income and benefit payments - around £15,000 for each person with the condition. Around 240,000 people in the UK are thought to have CFS/ME.

Comment The three Doncaster Health Trusts are part of the Sheffield bid. £8,300,000 shared between the 12 new centres is £692,000. It sounds a lot, but taking staffing costs and rent etc., there is not a lot left for us. How it is implemented locally remains to be seen. – Mike.

Your Questions Answered about M.E. by (Tony Britton, M.E. Association)

ME is a genuine, disabling illness.
Many doctors now accept that ME/CFS/ PVFS is a genuine and disabling illness. It is not a new illness since medical literature from the earliest times appears to describe the same
disease process. However, controversies and uncertainties still remain - especially over its name, the most appropriate forms of management and therapy, and what causes it. Although its incidence does appear to have increased over the last 50 years, the cause or causes are not yet clear. The onset is linked in most cases to an acute infection, but some people experience a slow, insidious onset. Some evidence implicates certain common viruses.

What is the difference between ME, CFS and PVFS?.
ME is Myalgic Encephalopathy. Myalgic: refers to the muscle symptoms; encephalopathy to the brain symptoms. It is still frequently referred to as myalgic encephalomyelitis, the name by which the illness was first described in The Lancet medical journal in 1956. But encephalomyelitis means inflammation in the brain and spinal cord, and there is little evidence to support this in ME/CFS. It now appears that alterations in level of brain chemicals, hormones and blood flow provide a more rational explanation.
CFS (chronic fatigue syndrome) is a name favoured by the medical profession because it makes no firm assumptions about the cause. Two major criticisms of CFS as a name are that it fails to reflect the severity of the illness and is used as a convenient label for anyone with unexplained fatigue.
PVFS (post-viral fatigue syndrome) was introduced during the 1980s as a 'description for anyone whose illness could clearly be traced back to viral infection.

A new name on which both doctors and patients can agree needs to be found. Meanwhile, The ME Association has compromised by using the combination term ME/CFS. This formula was also accepted by the Independent Working Group on CFS/ME in its Report in January 2002 (see back page).

Who gets ME/CFS?
. Research suggests there may be 240,000 people with the illness in the UK. Of these, more than 40,000 are children. All age groups can be affected, although onset is rare below the age of seven or over the age of 60. The most common age of onset is between mid-teens and mid-forties. Women are slightly more at risk than men. ME/CFS affects all social classes and ethnic groups.

How does ME/CFS typically start?
Some form of infection is the most common trigger. This could include flu, glandular fever, hepatitis and tonsillitis. Less common triggers include vaccinations [ (e.g. hepatitis B), pesticides
(e.g. organo-phosphate sheep dip) and major stressful events. In the remainder, there are no clear causes.

What are the major symptoms?
Muscle fatigue, pain (myalgia) and twitchings (fasciculations). Problems with short-term memory and concentration. Clumsiness and disturbances with balance. Sleep disturbance, especially waking unrefreshed. Alcohol intolerance and food allergies. Constantly feeling unwell, with flu-like symptoms (e.g. sore throats, enlarged glands, joint pains) and problems with
temperature control. Some people with ME/CFS also have irritable bowel symptoms and become more prone to allergic illness. Symptoms tend to fluctuate from day to day and are usually made worse by undue physical or mental activity.

How common is depression in ME/CFS?
Depression in any debilitating, long-term medical condition is commonplace. The explanation probably involves disturbances in brain chemicals and the psychological distress associated with I problems related to work, schooling, doctors, benefits and family commitments.

Is there a diagnostic test or cure for ME/CFS?
No. The diagnosis has to be made on the typical pattern of symptoms with the exclusion of numerous other causes of chronic fatigue. Anyone suspected of having ME/CFS should have a number of routine blood tests as well as more specialised investigations if the diagnosis remains in doubt.

What are the chances of recovering from ME/CFS?
Most people fall into one of four groups:
Those who manage to return to completely normal health, but this may take a considerable period of time.
The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often triggered by infections, operations, temperature extremes or stressful events.
A small but significant minority remain severely affected and may require a great deal of practical and social support.
Continued deterioration is unusual. When it occurs, a detailed medical assessment is advisable to exclude other medical problems.

What about benefit entitlement?
The Department of Health has made it clear that people with ME/CFS are perfectly entitled to claim sickness and disability benefits.

Management of ME/CFS

At present, there is no single drug which has been shown to be generally effective.

A low dose of a sedating tricyclic anti-depressant (e.g. amitriptyline) sometimes helps with muscle pain or sleep disturbance. Any co-existent depression must be treated with a full course of an appropriate anti-depressant. The dose should be increased gradually as people with ME/CFS seem to be more susceptible to drug side effects.
Evening Primrose Oil has been shown to help relieve some symptoms and may be worth a try.
Recent trials suggest there could be benefits from using immunological treatments but these are expensive and not generally available.
Benefits from using anti-viral drugs, hormones and magnesium injections remain unproven.
Lifestyle modification This involves achieving the correct balance between activity and rest. At the onset of ME/CFS, a period of bed rest may be necessary. Ideally, this should be followed by a gradual increase in both physical and mental activity. Try to find a balance which works for you. A well-balanced diet and avoidance of excessive caffeine are good ideas.

Therapies
Approaches such as acupuncture and homeopathy may be worth a try but do find a reputable practitioner. The Chief Medical Officer says cognitive behaviour therapy and graded exercise may be beneficial, provided they are conducted by qualified practitioners and tailored to suit individual requirements.

A LANDMARK REPORT

In January 2002, the Chief Medical Officer for England accepted all the recommendations contained in the Report of the Working Group ton ME/CFS, published after a three year investigation by a group of independent experts, including the ME Association.

The main conclusion was that ME/CFS is a genuine physical illness. It also imposes a substantial burden of ill health on the UK population, and that - while much research remains to be done - ignorance was no longer an acceptable excuse to fail to diagnose or manage the illness. Ideally, long-term management of the illness should be a partnership between doctors, other health professionals and patients, many of whom are expert in the role. The Working Group's conclusions include:- Healthcare professionals should recognise ME/CFS as a chronic illness and clinicians should listen to, understand, and help those affected to cope with the uncertainty surrounding the illness.

Early recognition with an authoritative, positive diagnosis is key to improving outcomes. All patients need appropriate clinical evaluation and follow-up, ideally by a multi-disciplinary team.
Most care can be co-ordinated by GPs with referral of patients for specialist opinion and advice where appropriate. The quality of the support, empathy and understanding of the GP is an important factor in the care of people with ME/CFS.
Those severely affected have specific difficulties accessing care and will need appropriate domiciliary services.
Review of the evidence highlights the lack of good quality research.
Therapeutic strategies identified as potentially beneficial in modifying the illness, or which can enable improvement, include graded exercise/activity programmes, cognitive behaviour therapy and pacing.
Patients can play an active role in their own care and the voluntary sector can provide support.

CHILDREN AND YOUNG PEOPLE

Children do get ME/CFS and can be profoundly affected.
Prompt, accurate and authoritative diagnosis is important and a second opinion should be obtained if doubt exists.
Care is best co-ordinated by a specialist, usually a paediatrician.
Care is best designed flexibly with the child/young person and regularly reviewed with patient and family.
Educational assessment and provision is an important element of the child's management.
Families of children with severe ME/CFS have been subjected to child protection orders. In cases of CFS/ME, clear evidence of harm should be obtained before convening child protection procedures, and a second opinion obtained from a medical expert in the illness.

FROM THE FOUNDING PRINCIPLES OF THE ME SOCIETY OF AMERICA SUMMER 2002

ME is not a fatigue state, and fatigue is not a defining symptom of ME. The defining characteristic of ME is that patients develop disease progression with physical exertion. If a patient improves with exercise, that person does not have ME.

Leger ME Birthday Cards
£ 2.00 per pack
Flu Vaccination: Safety issues for people with ME

Firstly, if you have a Carer or are dependent on someone to look after you, it would be prudent for them to have a flu vaccination. I hear comments like ‘It made me ill for a month after last time’, particularly from the older end of the population. My answer to that is that the vaccination is basically dead, or parts of dead virus given to alert your immune system to the threat. If you are suffering badly with dead virus, just think what would happen if you were infected with a live virus. However the case is not so clear for M.E. sufferers as there are many factors to be balanced up. Really the best person to help you do this is your doctor. I am not aware of any hard evidence about flu vaccines with M.E. sufferers. However the points are as follows:

For
a) It will provide a high degree of protection against those strains of flu likely to be around this winter.
b) Flu vaccination reduces the chances of catching flu by about 70% for a year.
c) A bout of flu will almost certainly cause a relapse or worsening of M.E. symptoms.
d) If you have other serious health problems e.g. lungs, chest, heart, kidney disease, diabetes, or are taking steroids, or have a compromised immune system, you are at risk of developing serious complications if you catch flu.
e) If you have already been vaccinated against flu while having M.E. and not had any problems then the chances are that it should be OK.
f) Some people with M.E. when given an immune system challenge like a vaccination experience a remission. This can also occur with things like bee stings.

Against
a) Experience suggests that some people will suffer a relapse of symptoms. From experiences of our members I would say about two thirds will relapse.
b) Some people with M.E. have a definite over activated immune system. It is accepted medical practice not to give vaccinations to anyone who is suffering from an infection or with an activated immune system, as it may produce a potentially serious or life-threatening adverse reaction.
c) Some people by the nature of an activated immune system have a little extra protection because of having M.E.
d) It is not possible to predict who will react adversely, and in what way, to any vaccination.
e) In certain cases of AIDS there is a theoretical risk that a vaccination will increase the levels of the HIV virus. This could also occur if other infections are present.
f) In event of a flu epidemic there are other drugs which can give a degree of protection e.g. Amantidine, but it has side effects.

Haemophilus or Menigeococcal vaccination may be offered as well. Some people have these vaccinations separately. Ultimately the choice as to whether vaccination is prudent is yours, on the advice of your doctor. If you do have a vaccination, be sure to have it at a good time, and rest in the following days.
Massage And Its Benefits by Anna Salagado (from the meeting of 27th September)

Massage is a complementary therapy. It is not intended to replace any treatment prescribed by your doctor but rather to enhance quality of life. The claimed physical benefits can include the following:
Helps relieve stress and aids relaxation.
Helps relieve muscle tension and stiffness as the massage progresses and the client relaxes muscle tension eases.
Fosters faster healing of strained muscles and ligaments as increased blood flow carries extra nutrients to injuries. Quickens the healing process.
Reduces pain, swelling and formation of excessive scar tissue as increased blood flow to scar tissue prevents the skin cells from dying and helps them to 'knit' back better to the surrounding skin. Swelling is reduced as lymph vessels carry water away from the swollen area and it is drained away in via the lymph nodes.
Reduces muscle spasms.
Promotes greater joint flexibility and range of motion.
Enhances athletic performance.
Promotes deeper and easier breathing (thus taking more fresh oxygen which leads to better oxygenated blood flow).
Greatly improves circulation of blood and lymph fluids and natural lymph/waste drainage. ME sufferers may have narrower veins and arteries, which are the 'roadways' of vital nutrients and oxygen. If these are narrower major organs, then the body in general may be sluggish, due to the lack of vital oxygen and nutrients reaching motor nerve points. In muscles, aches and pains are more troublesome as nutrients to bones and body tissues are also greatly reduced and not constant enough. Massage causes healing, therefore the veins and arteries begin to expand enabling blood and lymph flow to move up to three times faster for up to 12 hours after a massage treatment.
Reduces blood pressure.
Helps relieve tension related headaches, migraine, and the effects of eye strain.
Enhances the health and nourishment of skin. In general, skin visibly changes colour as the blood travels more quickly around the body.
Improves posture.
Strengthens the immune system as the lymph system becomes more efficient at flushing out waste toxins.
Overall, it improves functioning of the main circulation and nervous systems.
Increases seratonin and natural endorphins - enhancing medical treatment.
The claimed mental benefits are:
Fosters ‘peace of mind‘.
Promotes a relaxed state of mental alertness.
Helps relieve mental stress.
Improves ability to monitor stress signals and respond appropriately.
Enhances capacity for calm thinking and creates positive emotional benefits.
Reduces feelings of anxiety and promotes well-being.
Increases awareness of the mind/body connection.

There are at least 5 major different types of massage currently used, Swedish, Aromatherapy, Sports or Indian and Tibetan. Personally I recommend Swedish, Aromatherapy or Tibetan for ME sufferers for very different reasons:

SWEDISH. This is very relaxing to begin with but gathers momentum with slightly more invigorating movements such as tapotement, hacking and cupping to uplift and increase the blood flow. Excellent if you are wanting to be invigorated and are feeling sluggish.

AROMATHERAPY. Here it is the essential oils that are the key. The massage is merely the 'tool' in getting them into the body. It is advisable only to treat up to three ailments at one time, so as not to overload the system. Oils consist of a 'top' note, which gets into the body very quickly (within an hour or so), but evaporates within 6-12 hours, a 'middle' note which takes slightly longer to get into the body, (up to 6 hours), but lasts for 2-3 days and finally a 'base' note, which takes up to between 8-12 hours to get into the body and then lasts for 3-5 days. This is excellent for treating ailments directly, as a very slow massage technique, deeply relaxing and very holistic. The effects of the oils will be more prolonged if the client can refrain from taking a shower for up to 6-8 hours following a treatment.

TIBETAN. This treatment is purely for stress, anxiety, depression, insomnia, migraines etc. This is a pure holistic treatment, no oils, no invigorating movements, just gentle penetrating movements around the body's energy field, marma pressure points and chakra's. As with all treatments setting the mood is imperative, dim lights, oils burning, natural sounds, music etc. .. As a race we are very receptive and respond quickly to our immediate environment. I usually spray warm towels prior to any treatment, which also warms the body and leads the client into the first steps of relaxation.

Monitoring Massage Reactions and Progress...

With every massage performed, a unique client record card should be kept, especially when blending essential oils because with ME certain oils can cause reactions, usually to sensitive skin. However, the positive side to oils is that by charting a sufferers reaction to them, a pattern of positivity can emerge. It may be that one oil alone helps nothing but when blended with another has a very uplifting effect and so on. A client also begins to realise if different massage techniques are more beneficial as the seasons change. Some movements are more 'warming' if body temperature regulation is a problem.

Listing ailments associated with ME and relieving them.

This is very important and over time produces valuable information that on a day-to-day basis one may forget about or simply overlook and miss noting a vital connection- good or bad for future reference. For example: On the day of a treatment begin to log the weather, time and where treatment took place, (morning or afternoon), food intake, oils used (if any), massage technique, stressful events (if any), happy news etc. It may take weeks or months to discover that a certain food, drink, oil etc., is extremely beneficial or indeed a trigger or part of a jigsaw that is better being left out! Of course, the above is only a suggestion which many ME sufferers may already practice, but hopefully charting progress together the negative aspects of ME may begin to subside, leaving longer periods between sufferers 'hitting the wall' and living a more comfortable, pain free existence.

Anna with her Aromatherapy Oils Kit

Treatment Result Treatment Result
Acylovir (Antiviral) unfavourable Graded Exercise favourable
Amantidine (Antiviral) unfavourable Hydrocortisone (Steroid) unfavourable
Ampligen (Mismatched DNA) favourable Immunoglobulin (Blood product) 2 x unfavourable
Carnitine (Amino Acid) unfavourable Interfearon favourable
Cognitive Behaviour Therapy (CBT) 1 x favourable, 2x unfavourable Magnesium Sulphate(Mineral Salt) favourable
Fludrocortisone (steroid) favourable NADH (co-enzyme) favourable
Evening Primrose Oil favourable MAOI (Antidepressant) favourable
Prozac (SSRI) unfavourable Tefenidine (Antihistamine) unfavourable
Galanthamine (anti Altzheimer.) favourable B12 (Vitamin ) unfavourable
Visit to Sheffield to hear the Charles Shepherd Lecture.

A party, from our group visited Sheffield Group’s meeting on the 18th October. There were about 350 people in the meeting. The speaker at the meeting was Dr. Charles Shepherd, a well known author in M.E. circles of the book ‘Living with M.E.’ What follows because of limited space is a prêcis of his address. A fuller account of the meeting can be found on the Sheffield group website. http://www.sheffieldmegroup.co.uk/

Research

Historically, the name M.E. was first used by Dr.Melvyn Ramsey in the late 1950s. Much research was carried out by Dr. Behan in Glasgow. Recently, we have the Chief Medical Officer’s Report, which has defects but is good in the whole. Current research is not orchestrated or comprehensive.

The disease has three components

a) Predisposing factors which include Age, Genetics, Hormone issues and Personality.
b) Precipitating factors are viral infections, other non viral infections, pesticides and toxins.
c) Perpetuating factors after onset include brain abnormalities, immune dysfunction and muscle abnormalities.

i) Brain abnormalities include changed blood flow in the brainstem, changed hormones/chemistry, sleep disturbances, hormones and chemical transmitters, psychological depression and poor coping strategy. M.E. is NOT a persistent virus.
ii) Immune system disturbances. These are random abnormalities. There is no consensus of opinion as to what they mean.
iii) Muscular involvement include fasciculation, abnormal twitching of muscles. However the fatigue is not in the muscles. The fatigue is in the central nervous system and is very like the fatigue due to Multiple Sclerosis where the disease is in the Central Nervous System (CNS), not muscles. However, there are some patients with muscular problems due to abnormalities of glycogen or glucose metabolism.

All the evidence is consistent with M.E. being a brain disease. There are two sources of evidence for this:
a) Little white spots on MRI scans of the cerebellum of certain patients is suggestive of infection and/or inflammation.
b) SPECT scans show reduced perfusion (blood flow) to the brain following exercise. The work has been carried out by Dr Costa at the Middlesex Hospital. This abnormality is unique, does not happen in depression. This in the future may become a specific abnormality diagnostic of M.E.

The Hypothalamic Pituitary Adrenal Axis (HPA) is affected. The Hypothalamus controls the adrenal glands. As with Addison's disease M.E.s have lower levels of cortisol which causes lower blood pressure. The problem is due to the HPA axis not sending the right message to the adrenals. The lower levels of cortisol may explain auto immune problems associated with M.E. The problem is in activation of the sympathetic autonomic nervous system which is responsible for the stress response. There are problems with the parasympathetic autonomic nervous system whose function is to slow things down. This may explain irritable bowel type symptoms, Bladder problems and the problems with orthostatic intolerance of blood pressure which in M.E., when blood pressure falls too much causes fainting on standing .

With reference to psychiatric problems, half of M.E. sufferers have no problems but 10% had problems before onset, 15% have problems coincident with onset and 25% after onset. In depression cortisol levels are up, while, but in M.E. they are down. Other mental health problems include depression, anxiety and panic attacks. M.E. is not psychiatric illness.

Diagnosis.

Diagnosis is by exclusion of presence of any other medical condition likely to cause fatigue and the presence of the symptoms for six months. 10% of people with M.E. have another major medical condition as well. It is important that new symptoms always be followed up because M.E.s are not exempt from other medical conditions. Dr. Shepherd quoted us a case of a patient who had been written off as having M.E. when in fact she had a brain tumour which lead to a potentially dangerous medical condition not being treated. It is important that M.E. is not self diagnosed.

Management

1) The is no cure or magic drug equivalent to antibiotics.

2) It is possible to modify the disease process with drugs like hydrocortisone or tricyclic antidepressants. SSRI antidepressants have not been proven to be effective. Various controlled trials to find other interventions have shown mixed results.

3) Symptomatic relief is possible. Numerous drugs and remedies have also been tested for symptomatic relief, including medications for arthritis, evening primrose oil, beta blockers and various remedies for irritable bowel.

An increase in fluid intake often helps if there is evidence of low blood pressure, sometimes in conjunction with an increase of salt intake, but this must be checked with a doctor.

For any depressive component of the illness, choice of medication would depend on the medical history, but in all cases a low dose is essential to start with because people with ME seem unduly sensitive to drugs which act on the central nervous system.

For headaches, medications for migraine can be tried. For women, if menstruation brings a worsening of symptoms, a recent study has shown that oestrogen replacement hormone therapy can help. Carnitine, an amino acid supplement, has brought relief to some people’s muscle fatigue. For muscle pain, amitriptyline can be used in a very low dose, starting at only 10 – 25 mg taken at night. For muscle spasm there is baclofen and other medications used in Multiple Sclerosis. For pain that has a neuropathic quality (i.e. burning or piercing) a low dose of the anti-epileptic drug gabapentin may be worth trying.

For more general pain relief, some have found relief with amitriptyline and also the anti-epileptic medications. Acupuncture and other complementary therapies have been found to give relief, as have TENS machines and the various strategies used in pain clinics. For restless legs, Pergolide has brought relief to some if the symptoms are more severe.

Medications and supplements which have recently received publicity for substantial overall help with M.E. include Ampligen, DHEA, and Galanthamine, (used in Alzheimer’s disease), but these are purely speculative and Dr. Shepherd cannot specifically recommend them. Aerobics can conquer fatigue, but do not in any circumstances carry on regardless. Listen to your body. Pacing, balancing activity against rest is possibly the best solution. It is important to establish a baseline of activity.

Rest, except in the early stages is not the answer. Too much bed rest can do damage. Cognitive Behaviour Therapy (CBT) mean different things to different people. Before commencing CBT, an M.E. patient should find out what CBT really means for the person advocating it. CBT is really no better than counselling in minimising sick role behaviour. Most ME's need a practical method of coping and here an occupational therapist can help.

Alternative therapists can give time to patients which G.P.s don’t have. The treatments that he believe helps are Acupuncture, certain fatty acids GLA and EPA, Homeopathy, relaxation and sensible diet. Dr. Shepherd listed what he calls rubbish treatments which in his opinion are Harley Street, Allergy tests, anti-candida treatment, magnets and so called ‘natural’ remedies.


M.E. AWARENESS DAY REPORT

The Group was granted £858.71 from Health & Social Care Involvement Fund for an M.E. Awareness Day on Friday 19th September 2003. Thank you to Doncaster Central NHS Primary Care Trust for providing us with the grant. The day of action was a successful initial step in helping to break down barriers to accessing local health and support services; improving knowledge and skills among Doncaster health professionals; providing early diagnoses, treatment and care of M.E. sufferers. Thank you to Jane Colby of the Tymes Trust for her two presentations on the day. The first event was held at Doncaster Royal Infirmary (DRI) specifically for a medical audience and the second event was held at Wheatley Baptist Church for group members and the general public.

There are around 25 Information Packs still available covering a wide range of issues important to M.E. such as: The Origins of M.E. and Landmarks in Research; Guide to M.E. Symptoms, Causes and Treatments; Children & Young People and M.E.; Guidance on the Management of M.E.; Pain Control; Sleep Disturbance; The Use of Antidepressants.

Information Packs contain 170 pages of information, therefore we request a donation of £2.50 to cover package & postage. Please use the Response Slip enclosed with your Pathways in order to request your Information Pack.

10 people attended the event at Wheatley Baptist Church and 41 people attended the event at DRI. Below appears a report of feedback of medical professionals who attended the event at DRI.

Of the 41 people who attended the M.E. Awareness Event at DRI, 20 or 49% of people completed a Feedback & Evaluation Form.

RANGE OF HEALTH SPECIALTIES.

There were 33 usable responses to this question (taken from the Attendance Register):
Number Percentage Rank
Accident & Emergency 2 6.1% 6=
Anaesthetics 3 9.1% 3=
Care of the Elderly 1 3.0% 9=
Gastro 1 3.0% 9=
General Medicine / Clinical Effectiveness 10 30.3% 1
General Surgery 2 6.1% 6=
Genito Urinary Medicine 2 6.1% 6=
Medial Physics / Radiology 3 9.1% 3=
Medical Students 1 3.0% 9=
M.E. Support 4 12.0% 2
Paediatrics 3 9.1% 3=
Orthopaedics 1 3.0% 9=

IS THIS THE FIRST TIME YOU HAVE ATTENDED AN M.E. AWARENESS EVENT?

85%, or 17 out of 20 stated that this was the first time they had attended an M.E. Awareness event. This demonstrates that the M.E. Awareness Day was important for breaking down barriers and building understanding of M.E. and allied conditions among medical staff.
WHEN WAS THE LAST TIME YOU REFERRED A PERSON / PATIENT TO Leger ME?
Out of 15% (or 3 out of 20) only stated that they had referred people to Leger ME (DDMES). 2 of the positive responses were from DDMES Committee Members, the 3rd positive response was from a Consultant in Rehabilitative Medicine who last referred a patient in September 2002. This demonstrates the need for greater awareness of DDMES’ support services through various media such as posters, information packs, website and helpline, leaflets and awareness events.

AVERAGE GRADE FOR THE FOLLOWING MARKED ON A SCALE OF 1 TO 5, WHERE 1 IS THE LOWEST, 3 IS AVERAGE AND 5 IS THE HIGHEST SCORE:
(a) The Guest Speaker’s presentation: 3.84 or 76.8% satisfaction = very good
(b) Overheads: 3.47 or 69.5% satisfaction = good
(c) Handouts & Information Pack: 4.22 or 84.4% satisfaction = excellent
(d) Venue: 3.63 or 72.6% satisfaction = good
(e) Food & Refreshments: 3.31 or 66.3% satisfaction = good

WHICH PARTICULAR AREAS OF THE PRESENTATION AND INFORMATION MATERIALS INTEREST YOU. PLEASE INDICATE YOUR TOP 3 CHOICES.
There were 18 usable responses to this question:
Number Percentage Rank
(a) Diagnosis and Prognosis 14 77.8% 1
(b) Pain Management 7 38.9% 2=
(c) Energy and Activity Management 5 27.8% 5=
(d) Physical Rehabilitation 7 38.9% 2=
(e) Children & Young People and M.E. 5 27.8% 5=
(f) Sleep Disturbance 4 22.2% 7=
(g) Emotional and Mental Health 7 38.9% 2=
(h) Diet and Nutrition 1 5.6% 9
(i) Complementary and Alternative Therapies 4 22.2% 7=

The main interest was in providing an early diagnosis for M.E. sufferers in order to lessen the severity and length of the illness. Contrary to the bias of mental health professionals within M.E./C.F.S. circles, it would appear from the results that the illness is not all in the mind – there was as much interest in pain management and physical rehabilitation as managing emotional and mental health. The results reflect the wide ranging effects of M.E./C.F.S. and the need for a co-ordinated holistic approach among health professionals.

DO YOU HAVE ANY SUGGESTIONS FOR FUTURE M.E. AWARENESS EVENTS, ACTIVITIES AND PROJECTS?
(i) Histories from patients.
(ii) Bring in a patient with active disease.
(ii) Leaflets and clinic.
(iv) More events could help better understanding.
(v) A full clinical training day.

DO YOU HAVE ANY SUGGESTIONS ON HOW TO IMPROVE TODAY’S EVENT?
(i) Powerpoint, more modern presentation.
(ii) Maybe some video clips and patient cases.
(iii) Can not be improved – this was of a very high standard.
(iv) Do more meetings to inform Doctors.