The M.E. Debate

The M.E. Debate

1.1 Introduction
To date, the debate about the nature of M.E. has taken place almost entirely within the medical establishment, with attitudes toward the illness being determined by the different medical disciplines to which interested physicians and researchers belong. These are predominantly endocrinology, immunology, infectious diseases, neurology, psychiatry, rheumatology, and virology. This fragmentation of approach and the nosology of the debate indicated by David Bell’s title The Disease of a Thousand Names (1991), symbolise the lack of consensus concerning the disease’s aetiology, pathophysiology and natural history. This has resulted, for many years, in patients being given for their condition either a range of different names, or no name at all. Indeed, the issue as to whether there is a homogeneous condition as opposed to a heterogeneity of conditions is still unresolved and remains a controversial topic among patients and physicians alike.

Before the founding of the patient organisations, especially the M.E. Association in the late 1970s and Action for M.E. in the mid 1980s, both of which have taken campaigning stances on the physical roots of the disease, diagnosis was almost impossible to obtain. The growth of these patient organisations and the role of the media in publicising the condition(s) overtook medical understanding and research, leading to a situation where patients presented to their physicians with the view that they were suffering from a particular type of physical disorder. Traditionally it had been the doctor who knew more than the patient, but with M.E. the reverse tended to occur, leading to a certain hostility over the years between the medical establishment and members of patient organisations. The distance that existed between researchers and clinicians on the one hand, and the most severely affected patients, who are confined to bed - or, at the least, to the house - on the other, was exacerbated by a breakdown of existing traditional relationships of trust between doctor and patient. The difficulties encountered by this subset of patients in attending the relevant clinics or hospitals, and the fact that domiciliary visits are a rarity, has meant that this group has not only remained almost entirely hidden but has suffered a neglect both in medical care and in support provided by the patient organisations, since the latter operate predominantly on the basis of local group activities in which this subset is too disabled to participate. The Task Force Report (1994) tends to perpetuate the view that M.E. is not a chronic condition from which a percentage of patients do not recover. This 133 page document contains details of only one case history. This is offered as a case of “severe” M.E., presenting a fourteen year old girl who at one stage was unable to speak or swallow, but who recovered and returned to school in just over a year. The time is now ripe for a new epidemiological perspective on this section of the M.E. community. The story from ‘below’, as social historians would put it, should now be told.

1.2 History of the Debate

The survey by Donald Acheson (1959) presented a world-wide picture of epidemics of the ‘clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease, and epidemic neuromyasthenia’. Since that time speculation concerning the aetiology of the condition has been rife. Theories of its origins as post-viral (Behan 1989), persistently viral (Dowsett & Ramsay 1990), immunologically dysfunctional (Radda et al 1984, Behan, Behan & Bell 1985) and psychiatric (Kendell 1967, McEvedy and Beard 1970) being the most prevalent. Long-term monitoring of patients has been neglected. Consequently, apart from the work of Melvin Ramsay (1988), who has emphasised the chronicity of the disease, no model of its dominant symptomatology and natural history has been formulated.

Historically, polarisation of views of the illness, as a physical entity (Acheson, Behan, Dowsett & Ramsay) or as mass hysteria (McEvedy & Beard), compounded an already difficult position for patients seeking recognition for a severely disabling disorder. The research methodology of McEvedy and Beard, nearly 20 years after the outbreak at the Royal Free Hospital, London, in 1955, consisted of an analysis of the records of the women (chiefly nurses) involved in the epidemic which affected nearly 300 people. The conclusions of this study were probably influenced by earlier work on apparent outbreaks of mass hysteria in women’s institutions and the general view that women are more subject to hysteria than men. The influence of this piece of entirely text-based research, together with the work of Kendell, has been far-reaching. Its methodological perspective has survived two and a half decades, dominating the recent work of psychiatrists such as Simon Wessely and colleagues (1988), who stress the similarities between the postviral fatigue syndrome and common psychiatric disorders in the community, and more recently Michael Sharpe (1996), whose definition of the disease is based entirely on the concept of fatigue. In brief, this tradition in psychiatric thinking has been chiefly responsible for the prevalent view that recovery from M.E. is possible with the help of rehabilitation programmes chiefly in the form of cognitive behaviour therapy. These are designed to persuade the patient that, as no evidence of organic physical disease has been found, a programme of carefully graduated increasing activity should bring about a recovery. However, psychiatrists have over the last few years moved more towards the view that the physical aspects of the condition should be given more attention.

1.3 The Place of Patients’ Views

To date, the viewpoint of patients has been marginalised. On the whole, patients’ views of their own experiences have been energetically opposed, with systematic monitoring of those chronically affected not being considered relevant. Indeed, the view has been put that chronicity is a result of bad management and the patients’ belief that they are suffering from an illness which prevents them from returning to normal activity. Many diagnosed with M.E. have been left to their own devices over many years to cope with the consequences as best they can; they have often been blamed for not getting better. In fact the dominant medical discourse of recovery within x years (where x is usually between 2 and 10) has led those whose illness has extended beyond that period to believe that it has been caused by psychological inadequacy or inappropriate life-style. CHROME’s objective is to begin to bridge the gap, first, by collecting from patients in the UK diagnosed with M.E. case histories of those most severely affected, and second by monitoring them over the next ten years. What follows is the first instalment of the story from below, which may provide a model for the group most severely affected by the disease.

CHROME - Case History Research On M.E.