GPs' attitudes to a self diagnosis of myalgic encephalomyelitisBMJ 1995; 310 doi: https://doi.org/10.1136/bmj.310.6990.1330 (Published 20 May 1995) Cite this as: BMJ 1995;310:1330
Sufferers continue to be misrepresented
EDITOR,—Shonagh Scott and colleagues' paper on general practitioners' attitudes to self diagnosed myalgic encephalomyelitis illustrates, if nothing else, the continuing misrepresentation of this illness and those who suffer from it.1 Contrary to the authors' claims, Action for ME has never encouraged self diagnosis, and nor have the other “active support organisations” in Britain. Moreover, we have never advocated that patients should make unreasonable demands on their general practitioners.
Despite what Scott and colleagues imply, it is not just patients who recognise the existence of myalgic encephalomyelitis but also the World Health Organisation (the disease appears in the International Classification of Diseases (10th revision)), several handbooks, and many doctors. Indeed, positive attitudes to fatigue syndromes such as myalgic encephalomyelitis have been noted in several studies in the past few years. For instance, Ho-Yen and McNamara surveyed 178 general practitioners in Scotland and found that 71% accepted the existence of the disorder.2 In New Zealand the figure was 90%.3
With regard to the dangers of diagnosing myalgic encephalomyelitis, I have not come across any evidence in the literature that correct diagnosis is associated with maladaptive attitudes, resentment, or “unnecessarily prolonged disability” except in a tiny minority. Indeed, the latest research available to us (unpublished) suggests that early diagnosis and appropriate advice help over 80% of patients to improve within six months. There is no evidence that self diagnosis is more common in myalgic encephalomyelitis than in early multiple sclerosis.
Finally, the vignettes used in the article do not describe a typical case of myalgic encephalomyelitis. Indeed, one of the psychologists who advise us thought that the list of symptoms was more indicative of clinical depression. It is not surprising, therefore, that the doctors responded to the different descriptions in slightly different ways.