Decline, but not fall

Press, 4 September 1982, Page 16

Decline, but not fall

The Nile-High Staircase. By Toni Jeffreys. Hodder and Stoughton. 214 pp. $14.95. (Reviewed by Ralf Unger) Myalgic Encephalomyelitis (ME), or Royal Free Disease, is a vague, muscularweakening disorder which, in the author’s case, transformed her from a vital, physically vigorous, middle-aged woman to an anergic invalid with additional symptoms of depression and pain appearing and disappearing. Hysteria can appear in numerous physical expressions that come and go if there is conflict in the mind. For the author the similarity to hysteria led to a nightmare series of encounters with the medical profession in Australia and New Zealand in what she considers was a consistent attempt by doctors to counter their own ignorance by projecting their confusion on to the patient. This, in spite of the fact that eventually many hysterical-diagnosed sufferers show themselves to .have an organic disease which in its early stages does not fit into a neat, classified slot. An accumulation of negative biochemical tests is sufficient for her consultants to smugly decide that, as there is no evidence for an infective process, there can be no disease. When there are some suspicious findings they are overlooked in the total picture of disbelief. The author admits that she is not a conventional “patient" in that she is intelligent and refuses to hold the professional in awe as someone with godly abilities to sift information. She starts a round of referrals to psychiatric specialists who firmly zero in on the fact that “her father died when she was young, her husband is younger than she is, she has already had a tubal ligation, and she is a professional woman." Thus, the arenas of childhood and later neurosis seem to be the target of readjustment. In essence, the message

she receives is that an illness does not exist until the medical profession says that it does.

Doctors, she concludes, “must drop their god-like trappings, worn clutchingly, uncomfortably, lest the veil slip to reveal the feet of clay ... if our gods cannot somehow reshape themselves, become more human, the people will turn upon them and hurl them from the Temple." It is unfortunate that in the process of this polemic Dr Jeffreys - a Ph.D. in English and Social History - allows her shattering disappointment to overcome scientific objectivity, as for example her remark that a virus may even be responsible for schizophrenia, as mentioned in a 8.8. C. broadcast she happened to hear. There are many useful pieces of advice to doctors from the patient's point of view — such as the importance of sitting physically close to the patient, not standing over her in the bed, but sitting next to it. She makes the suggestion that to remove any suspicion of the profitmotive, recommendations for surgery should not be made by those who stand to gain financially from surgery; she. objects to the intoxication with technology. Whether ME is, in fact, a viral disease that comes in occasional epidemics is still not fully accepted, but there is no doubt that Toni Jeffreys has been the victim of a system that has excluded her from compassion and egalitarian guidance, through what she views as arrogance and a view of disease rather than of a human being who has it. As a result of her illness she has here gathered the meagre research on ME and has helped to form groups for mutual support and the exchange of information. Contact addresses in various countries are. given in the book for those who have a similar vague history of debilitation continuing over the years.