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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.

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.

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.

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 hay fever 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 pre-treatment with antibiotics.

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.

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.

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.

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.