Q:Could I follow up the question and answer item of Vol. l No. ll on myalgic encephalomyelitis with some brief personal comments?
The only medically qualified practitioners who "treat" ME patients are (i) psychiatrists, using antidepressants and behaviour modification therapy, (ii) Dr Peter Nixon, from Charing Cross Hospital, who believes that almost all these patients are hyperventilating/overbreathing, and (iii) a small group of private doctors, some of whom are charging desperate patients large sums of money for the very speculative approaches to management quoted in the item. If these three groups are all having the remarkable success rates (up to 75 per cent) which they claim, then surely the time has come for them to submit their results for peer review and publication in the medical journals. On the other hand, are they all treating the same illness? I suspect not.Despite the enthusiasm of many alternative practitioners (and self help books on the illness) there is still no proven link between ME and
Mineral and trace element deficiencies, but publication of the magnesium study quoted by Martin Lev is awaited with interest
Candidiasis, intestinal or systemic
Clinical immunodeficiency, although various changes in components of the immune response (eg natural killer cells) are being reported
The link with multiple food allergies and environmental sensitivities is very debatable, and it is worrying that so many patients with irritable bowel type symptomatology seem to be diagnosed (and treated) for food allergy using techniques which conventional allergists consider inaccurate (eg cytotoxic tests).
Lastly, chronic infection with the parasite Giardia lamblia is certainly capable of causing persistent fatigue and should be looked for in any patient who returns from abroad with an acute gastric infection followed by episodes of soft offensive stools, stomach discomfort and flatulence. (It can also cause arthritis, urticarial skin rashes, muscle pain and lactose intolerance.) Fortunately, Giardia cysts can be identified from stool samples taken on successive days. Once identified there are some very effective drugs (Flagyl or Fasigyn) for eradicating the parasite; there is no need to resort to Chinese herbal medicine.
Dr. Charles Shepherd, Medical Advisor, ME Association.
A:We asked Belinda Dawes, co-author of Why M.E.? and a doctor who treats ME patients, and Martin Lev, director of the ME Action Campaign to reply. Belinda Dawes:
"I've been applying to the ME Association for over five years for funding to prove that the treatment I'm using works. As it is unethical to charge private patients for research or to set up a separate reserve fund for research, I am dependent upon outside research. My inability to prove my clinical results is purely due to an absence of funding, and not an absence of desire. If you are truly interested in putting my claims to the scientific test, why don't you agree to fund me? I would even be willing to have an independent party analyze the statistics.
"Now to address your individual concerns. I've seen more than l,000 people suffering from ME like symptoms who show documented vitamin B6 and magnesium deficiencies.
"In my personal experience over 80 per cent of patients with ME have a positive gut fermentation test for systemic candida albicans (this is a test for candida developed by Biolab and published in the Journal of Nutritional Medicine). Therefore, either systemic candida is normal, or it is very prevalent in ME patients.
"I personally don't measure toxic colon or hypoglycaemia, and believe the latter is a red herring.
"I consider it worrying that Dr. Shepherd's patients with post viral and IBS symptoms are not being treated for food allergy, since virtually all the patients I see with IBS so treated get better in two months.
"As for Giardia, it is endemic in Austria, Russia and New York, and not simply abroad; in fact, 7 per cent of our population has unsuspected Giardiasis. In our experience, taking a rectal swab is far more effective than taking stool samples. (See WDDTY, Vol. l, No. 6, pp 6-7.) I agree that Flagyl and Fasigyn are effective in treating Giardia lamblia. But artemesia annua is less toxic with fewer side effects. The antifungal drugs you mention have been proven to cause serious birth defects and patients run a high risk if they are unknowingly pregnant when they take the drug."
"If Dr Shepherd and the ME Association are so keen on having research done on these supposedly ineffective treatments why don't they put their l/4 million worth of research funds into proving or disproving the nutritional approach?
"Blaming illnesses on mysterious viruses is very much in vogue these days. But it's becoming very clear to us that 'hunting the bug' ie, blaming ME exclusively on a virus is an incomplete, if not hazardous approach to medicine.
"One need only look at the many AIDS patients being made more ill by taking AZT, with its myriad of side effects, particularly in light of the fact that the man who supposedly discovered the HIV retrovirus now believes it alone does not cause AIDS.
"Attempting to ignore the clinical evidence of an association between ME and food intolerance, allergy and candida is a tunnel vision approach likely to fail primarily because it rules out a number of likely contributory factors before the cause of ME has been proved.
"Until we do root out the cause of ME, isn't the best approach to be open to all possible causes and not to pour cold water on complementary approaches, particularly if they are making patients better?"
We would only add the warnings of G. D. Searle in the Physician's Desk Reference about Flagyl (metronidazole) which is that the drug has been shown to be carcinogenic in mice and rats, and has also been shown to cause convulsive seizures and "peripheral neuropathy," or numbness of extremities.
Some l2 per cent of patients report nausea, headache, anorexia, vomiting, diarrhoea, cramping or other gastrointestinal distress. Interestingly, one side effect of Flagyl is vaginal thrush, which could exacerbate candida present in female ME patients.