The History


ME and CFS - the basis of the controversy

It is only since the 1970s that such heated controversy about the reality of ME has existed. In that year, two psychiatrists named McEvedy and Beard published a paper in which they asserted that the 1955 outbreak of ME at The Royal Free Hospital in London was nothing more than mass hysteria (1) . Those authors did not interview or examine a single person who had suffered in the 1955 outbreak; the purpose of their paper was said to be nothing more than a vehicle for a PhD thesis and neither doctor had any interest in ME. They based their conclusion on nothing more than a perusal of carefully selected old case notes, excluding from study the notes of those who had clear evidence of neurological disturbance. That paper opened the door to rife speculation from a future generation of psychiatrists.

At the root of the problem of recognition and acceptance of the extreme morbidity which can be caused by ME are two factors: the matter of terminology and the selection of patients being studied by medical researchers.

ME occurs in epidemic and sporadic form. There have been many recorded outbreaks worldwide (2) and it has been documented in the medical literature since 1934 (3) . It was first named as ME in 1956 (4) but before that it was known as atypical poliomyelitis. In 1962 the distinguished neurologist Lord Brain included it in the standard medical textbook on neurology (Diseases of the Nervous System, sixth edition, Oxford University Press, 1962); in April 1978 the Royal Society of Medicine held a major symposium devoted to ME, at which the condition was declared to be a diagnostic entity. Also in 1978 the Postgraduate Medical Journal devoted a complete issue to ME. (5) ME was formally classified as a disease of the nervous system in the World Health Organisation International Classification of Diseases in ICD 8 (which was approved in 1965 and published in 1969) and continues to be listed as a neurological disorder in the current Classification (6)

In the late 1970s and 1980s there seemed to be a remarkable rise in incidence of a condition virtually indistinguishable from ME, to the extent that the powerful American medical insurance industry became alarmed. In 1988 the result was a new case "definition": the condition was henceforth to be called "chronic fatigue syndrome" or CFS; the cardinal neurological components were to be excluded from the case definition and instead, emphasis was to be on chronic "fatigue" as the primary symptom, occurring as a post-viral effect following glandular fever. This was at a time when in the United States the condition was sometimes called Chronic Epstein-Barr Virus (CEBV -- the virus responsible for glandular fever). Two members of the committee who advised that the name ME must be retained resigned over what they regarded as an unwarranted changing of the reported symptoms and a deliberate downplaying of the severity and chronicity (7) . Nevertheless, "CFS" was born, and it has since become an umbrella term which has given rise to much confusion. CFS is not a single diagnostic entity: it has become a heterogeneous and non-specific label embracing potentially 30 different medical and psychiatric conditions in which tiredness and fatigue are prominent. As a basis for sound scientific research, it has been a disaster.

At about the same time in the UK, psychiatrist Simon Wessely rose to prominence; since the late 1980s, he and his close psychiatrist colleagues have taken a different view by continuing to insist that there is no such disorder as ME, claiming that previous studies of ME "reflect those who seek treatment rather than those who suffer the symptoms" (8) .

Wessely himself believes that the World Health Organisation got it wrong and he wants to overturn the WHO classification of ME as a disorder of the nervous system, claiming that "CFS" is the best terminology and that the condition is a somatisation (psychiatric) disorder. Wessely's view was published in The Lancet:

"The inclusion in the tenth revision of the International Classification of Diseases (ICD 10) of benign myalgic encephalomyelitis as a synonym for postviral fatigue syndrome under Diseases of the Nervous System seems to represent an important moral victory for self-help groups in the UK….neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders….neurasthenia would readily suffice for ME. Applying more stringent criteria for CFS in the hope of revealing a more neurological sub-group succeeds only in strengthening the association with psychiatric disorders. We believe that this latest attempt to classify fatigue syndromes will prevent many people from seeing the world as it actually is" . (9)
In the 1996 Joint Royal Colleges' Report on CFS (half of the members of this working group were psychiatrists and included Dr Simon Wessely), the authors again dismiss the existence of ME. They urge that those with CFS be given antidepressants even in the absence of depression and even though published studies confirm that Prozac (an antidepressant) " does not have a beneficial effect on any aspect of CFS" and that administration of it is unwarranted (10) . They also stated that future research for an "organic" cause is unnecessary. Indeed, the Report states that some people "use the results of immunological tests as evidence for a so-called 'organic' component in CFS (but) such abnormalities should not deflect the clinician from the (psychiatric) approach …… and should not focus attention towards a search for an 'organic' cause".

Contrary to the wishes of some, although ME has been "subsumed", it has not gone away!