Mystical revelations about mysterious ME

Press, 29 August 1989, Page 16

Mystical revelations about mysterious ME

SIMON WESSELY

asks if the

mystery disease, ME (myalgic encephalomelitis), is becoming too popular:

Recently I reviewed some books on “ME” (myalgic encephalomyelitis, or post-viral fatigue syndrome) for that most orthodox of publications, the "British Medical Journal.” Since then, two more have appeared, as well as an ME Diary, and we are soon promised an ME cookbook.

At this rate, by Christmas the shops will contain little else ... what on earth is happening? First, it is necessary to reveal my guilty secret. I am a psychiatrist, which, in some ME circles, is equivalent to saying one is a child molester. Nevertheless, I have seen a lot of ME sufferers, and have no doubt that they are afflicted with illnesses that are genuine, severe, and horrible.

Yet I found most of these new books baffling. All are describing illnesses I recognise, and all draw on familiar scientific concepts and terminology, but it is not the science I know. Instead, what is described is a parody of the scientific method, largely restricted to accounts of food allergy, environmental hypersensitivity, Candida infection, and nutritional imbalance. None of this is new, and all have been contained in a regular stream of “alternative medicine” books over the years. The difference now is the title rather than the content. The fact that all thse subjects have attached themselves to ME owes little to science, and much to an almost mystical process of revelation.

I choose my words advisedly, because ME is fast being incorporated into a religion, dependent on faith, with prophets and devils. Like a religion, such books cover most forms of misery, and tell us that there is little of human suffering that cannot be in part brought under the ME label, and thus explained and healed.

I have considerable doubt that all such distress can be explained by any combination of a virus, allergy, intolerance, or immune deficit. Therein lies the problem. These explanations, are all-encompassing, but chameleon-like. These ideas explain everything,

and thus nothing. My objections are thus less the neglect of psychiatry (indeed several authors contain accounts of the way personality can influence illness and recovery, and do not ignore the real dangers of depression), but more with the all-embracing philosophy and the absence of any critical assessment.

These books are clothed in the language of science, but are really moral tales. Indeed, one deplorable consequence is the tendency to make analogies with that other tragic modern morality play, A.I.D.S. The title of one, “Overload,” describes the philosophy of them all. ME is due to ovework by the person, overstressing of the immune system, and over-pullution of the environment.

The treatment is to rest the individual and clean the internal and external milieu. Live slower, purer, and cleaner lives and all will be well.

If only it was so simple. Perhaps it is, since we are told that most of the patients are “now completely well, working full time and leading exciting and dramatic lives.” However, it is disclosed that ME “never really goes away,” and that cure is impossible. You must always take care to do “75 per cent” of what you feel capable of. This is not science, but rather a variant on the old " self-help mantra: “Every day in every way I am getting better and better, but only as far as 75 per cent.” You can improve, but can only stay 75 per cent well so long as you keep sin and the devil, in the form of stress, impurity, and overexertion, at bay. Psychiatry has long been troubled by the danger of labelling, and how the act of diagnosis can in certain circumstances do more harm than good. After reading books on ME I wonder if the diagnosis of ME also carries within it the potential for harm, when applied uncritically. There are two exceptions. Charles Shepherd and David Smith nail their colours firmly to the more orthodox medical mast. The former gives a more personal account of the Subject, while the lat-

ter is stronger on the real scientific background.

David Smith is the medical adviser to the ME Association. Over the years, the ME Association has grown in maturity and responsibility, and he reflects this. If this was a review for a professional journal I would severely criticise some aspects of his work and praise others, ask him to revise it, then recommend publication. At medical meetings we would have (and have had) intense disagreements, but such argument would be possible because of our fundamental similarities: the acceptance of doubt, the value of research, the dangers of exploitation, and the reality of both physical and psychological suffering. It is perhaps symbolic that his is the only hardback, since it contains the most solid and durable information. At the moment we still do not know the state of the ME Emperor’s New Clothes. He isn’t quite naked, but is probably less well dressed than these books portray. Until the true nature of these illnesses is revealed, then sufferers will remain confused and perplexed. I thus hope that doctors will follow the lead of Smith and Shepherd: to remain open-minded, but not so open that our brains fall out. These two do not possess the answer, but they know it is unlikely to lie with treatments that are better at relieving you of money than suffering. The last word should rest with Dr Frank Allan, an Americn physician. He had the unenviable task of chairing a meeting on the ME syndrome. It took place in 1944 in Chicago, reminding us that little is new. He had to listen to one physician describing patients as neurotic, another saying it was all due to hyperventilation, and finally a third saying all his patients had physical illnesses associated with metabolic problems after subclinical infections. As is customary in scientific meetings, the chairman tried to end with a consensus. “The co-operation of physicians in all fields of medicine is essential to secure the best solution to this problem. There is no one remedy, and certainly the answer has not been furnished by the vitamin capsule.” I often think about Dr Allan, still waiting for that co-operation. — Copyright London Observer