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 psycho logic 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 apnoea 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 assessment. 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 no steroidal 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.
 

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 questionnaire.

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 wonderful. 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 Lymphocytes. 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 over activity. 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.

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.
 

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)

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.
 

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 apnoea 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 assessment. 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 psychological 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 no steroidal 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 - Thyroxin, hydrocortisone and other steroids.