Column17 January 2002

ME: the making of a new disease
Who benefits from the recognition of ME as a 'genuine illness'?

by Dr Michael Fitzpatrick

Myalgic Encephalomyelitis (ME) - also known as Chronic Fatigue Syndrome (CFS) - must be recognised as a genuine illness, according to a working group reporting to the Chief Medical Officer, Professor Sir Liam Donaldson (1). The report insists that doctors must provide 'prompt, authoritative diagnosis', appropriate advice and early access to treatment (2).

'This is a real disease affecting real people' declared Professor Donaldson, enthusiastically endorsing the ME report. But the appearance of consensus behind the proclamation of a new disease is deceptive. Over the three years of its existence, the working group was riven by disagreements; a total of 10 original members, including four psychiatrists and a public health consultant, resigned before the report was published. And there remains confusion about ME throughout the rest of the medical profession - for good reason.

I was delighted at Christmas to receive a card from a long-standing patient with ME. Over the years I have done little enough to alleviate her debilitating symptoms, but we have met periodically to review progress as I have arranged referrals and prescribed various medications. We have also discussed the wider controversies around ME. The last time I saw her she said, 'I know you don't believe in ME, but it helps to talk about it'.

As it happens, I can't recall ever saying that I don't believe in ME - though I did express some scepticism about the value of this diagnostic label. In future, I will have to be more careful. According to Chris Clark, chief executive of Action for ME and a member of the key group, 'what should and will happen the day after publication [of the report], if a doctor uses the immortal words "I don't believe in ME", the patient has the power to say "I'm very sorry, but the Chief Medical Officer says that it does exist and here's the evidence"' (3). If GPs ignore or refuse to follow the new official guidelines, continues Mr Clark, they could be liable for disciplinary action.

The new official policy on ME is the result of a consensus forged between ME activists and a small number of medical authorities. This consensus emerged following the exclusion of leading psychiatrists and other experts in this field. Endorsed by the Chief Medical Officer, this policy is now to be imposed on the medical profession as a whole. Following the scandals over hospital practices at Bristol and Alder Hey (4), the CFS/ME report provides another example of the government tactic of forming alliances with unrepresentative and unaccountable voluntary organisations, and using them as a stick with which to beat the medical profession into line with New Labour policy.

To grasp the likely consequences of this dogmatic and authoritarian approach in one area of medical practice, we need to look more closely at some of the controversies that dogged the working group.

ME: What's in a name?

The term 'benign myalgic encephalomyelitis' was first coined in response to an outbreak of muscle pain and fatigue among nurses and other staff at the Royal Free Hospital in London in 1955. Though the term implies inflammation of the brain and spinal cord, no such pathology was ever identified. This episode was subsequently widely regarded as an epidemic of mass hysteria, and no infectious cause was ever established.

In the 1980s the term, abbreviated to 'ME', came to be applied to isolated, but increasingly numerous, cases of profound and prolonged fatigue, associated with muscle pain and malaise, and a wide range of other symptoms. Because some patients complained that their symptoms followed flu-like illnesses, the term 'post-viral fatigue syndrome' was also used. The fact that the majority of early sufferers from ME were middle-class professionals, predominantly young women, was reflected in the pejorative sobriquet 'yuppie flu'.

In the course of the 1990s, medical opinion shifted towards the term 'chronic fatigue syndrome', which emphasised the predominant symptom without making any assumptions about the cause of the condition or its pathology. A report by an earlier working group of the royal colleges of physicians, psychiatrists and GPs in 1996 was boldly entitled 'Chronic Fatigue Syndrome'. It explicitly rejected the term ME on the grounds that it 'erroneously endorses the existence of a specific pathological process for which in the context there is no evidence' (5).

The origins of the current report lie in the dissatisfaction of organisations such as Action for ME and the ME Association, which are supported by some sufferers and their families and carers, with the 1996 report and other similar accounts. Many ME activists feel that the term 'fatigue', a familiar synonym for 'tiredness', fails to reflect the profundity of their symptoms. Some also cling to the conviction that their symptoms are the result of some infectious agent or immunological disorder, and thus favour a label which implies such an aetiology (though exhaustive researches have failed to confirm this).

No doubt, like generations of doctors, some enjoy the legitimacy conferred by a polysyllabic Latinate term, even though - perhaps because - it mystifies rather than clarifies the underlying condition. In response to representations along these lines, the new working group was established in July 1998.

The CFS/ME Working Group Report presents the adoption of the formula 'CFS/ME' as a compromise between the medical preference for CFS and the patients' groups' preference for ME. While approving the continuing quest - at an international level - for a consensus on definitions and terminology, the report proposes 'CFS/ME' as an 'umbrella term', an approach it believes 'ensures as far as possible an inclusive approach' (6).

In reality, the approach reflected in this compromise ensured the inclusion of the ME lobby and the CMO, and the exclusion of the broad body of medical and psychiatric opinion represented by the 1996 report (and reflected in the resignations from the current working group).

The CFS/ME compromise reflects a surrender of medical authority to irrationality. The scale of this capitulation is apparent when Professor Donaldson claims that CFS/ME should be classified together with conditions such as multiple sclerosis and motor neurone disease (7). It is a measure of the perversity of this discussion that ME activists should be reassured by the identification of their condition with diseases which are progressive and often fatal (neither of which is true for CFS/ME). Furthermore, both multiple sclerosis and motor neurone disease have distinctive clinical features and pathological processes which can be confirmed by investigations (neither of which is the case for CFS/ME).

From my perspective as a GP, the umbrella term CFS/ME appears to conflate two distinct groups of people suffering from fatigue. ME is usually (in my surgery, always) a self-diagnosis: somebody comes in, sits down and says 'I think I've got ME, doc'. This is what we in general practice call a 'heartsink' encounter. Once a patient has accepted the ME label, it seems to become a self-fulfilling prophecy and it is very difficult to deflect them from a course of prolonged incapacity, with all its adverse consequences.

Though there are always exceptions, such patients tend to be young, female and middle class, teachers, nurses, social workers. In more recent years, ME has made its appearance in the children of the above, and, unlike wealth, it has shown a tendency to trickle down into less affluent sections of society.

Embarrassed by the Guardian-reader image of ME, researchers in the field have embarked upon surveys of the general population, inquiring about fatigue, malaise, etc. These surveys have, not surprisingly, revealed significant levels of such complaints in all social classes, age groups and ethnicities. This allows the ME lobby to deflect criticisms of its socially exclusive character with claims about the universality of CFS.

The activists insist that the perception of 'yuppie flu' has arisen simply because middle-class people are more likely to present such symptoms to doctors and gain access to specialist clinics. The notable effectiveness of the ME lobby undoubtedly reflects its base of middle-class supporters, including a substantial body of health professionals, as well as journalists and others well-connected to the political process.

The result of conflating patients who subjectively identify themselves as sufferers from ME with those who simply respond positively to questions about whether they feel tired all the time is that the specific features of the emergence of ME are effaced. There can be little doubt that researchers asking pointed questions could have uncovered significant levels of tiredness at any time over the past century. But it was only in the 1980s that people started coming to their doctors in large numbers complaining that they thought they had ME.

It seems likely that the sociological background of these patients, their class and gender, their educational and occupational experiences, their concentration in public service professions at a time of wider social and political crisis might have some bearing on this remarkable epidemic. Under the CFS/ME umbrella, however, the socially and historically distinctive features of the condition remain in the shadows.

In her 1997 book Hystories, the American literary critic Elaine Showalter drew a parallel between the prevalence of hysteria in nineteenth century Europe and America and the phenomenon of ME in the contemporary West (8). Though this, and other studies, have tended to identify ME with Victorian 'neurasthenia' and other past manifestations of fatigue, as though the same condition were simply recurring under different guises, a historical approach has the merit of challenging the myopic focus on the increasingly implausible quest for noxious viruses or environmental toxins.

Instead, this approach raises questions, such as - why these people?, why now?, why these particular symptoms? - in a way which has generally been ignored in the controversies around ME. (One unfortunate consequence for Showalter was that, having angered the ME lobby, she attracted hostile protests wherever she travelled to promote her book - prompting her observation that when it came to polemics, they showed little sign of fatigue.)

Trials and tribulations

The prevailing medical consensus about the treatment of patients with CFS was promulgated in the form of a systematic review of interventions, carried out by two independent teams (one in York, UK the other in San Antonio, Texas, USA) and published in the Journal of the American Medical Association in September 2001 (9).

While noting the poor quality of much research in this field and the confusion surrounding case definitions, outcome measurements, and other matters, this review concluded that only two forms of treatment - graded exercise therapy (GET) and cognitive behavioural therapy (CBT) - could be shown to be modestly effective. Graded exercise is 'a form of structured and supervised activity that aims for gradual but progressive increases in aerobic activities such as walking or swimming'; and 'renablement on the cognitive behavioural model aims to empower patients to identify, understand and modify their belief systems and behaviours, to maximise their own functioning and wellbeing with support and guidance from the therapist'.

In a widely publicised commentary on this review, Professor Simon Wessely, one of Britain's leading researchers into CFS, declared that 'the time has come for clinicians who wish to help their patients with CFS, and for activists who truly represent the interests of patients, to begin by welcoming this review…and determine the direction for coordinating their efforts' (10).

Anticipating a hostile response to the review from the ME lobby, Wessely feared that the authors of this report would join others, like himself, who had been 'vilified', 'abused and intimidated' for 'producing research unpopular to powerful special interests'. He warned that such a response would 'hasten the disengagement of some healthcare professionals who have been active and involved in CFS clinical care and research for many years'.

The publication of the current report on CFS/ME confirmed the prescience of Wessely's warnings. It appears that the issue that finally led to the departure of around one third of the 'key group' was the decision to endorse the 'energy management strategy' of 'pacing' in addition to GET and CBT (11). Pacing, according to the report, 'is based on the "envelope" or "glass ceiling" theories of CFS/ME, which suggest that energy is finite and limited, and that the best way for a patient to manage their illness is to live within this envelope'. As the report concedes, 'the underlying principle might be viewed as being somewhat contradictory to the underlying principles of more active rehabilitative strategies'.

This approach is appealing to some ME activists, who hold that the underlying disease process in which they believe may not be responsive to graded exercise and may indeed be exacerbated by it. On the other hand, many clinicians fear that pacing could perpetuate the condition by encouraging prolonged and debilitating inactivity.

This is how the report sums up its case for recommending pacing: 'Although the research evidence base for this therapy is very limited, many voluntary organisations and a proportion of clinicians consider that pacing has an important place to play in the management of CFS/ME.' (Some would argue that the research base is non-existent and the proportion of clinicians favouring pacing very small.) This formulation also contradicts the principle set out in the introduction to the report: 'to provide advice on clinical management that reflects the importance of individualised, holistic, care and tailoring approaches based on the best possible evidence to reflect particular needs of the patient and their carers' (12).

The best possible evidence would, according to the York/Texas teams, support an official recommendation of only GET and CBT, a view upheld by those who resigned from the working group. It therefore becomes clear that the decisive factor for the working group is not evidence, but the unsubstantiated convictions of the ME organisations and those clinicians who go along with them.

A clash of models

The rival factions in the CFS/ME wars are mobilised around two conflicting theories of the illness, designated in the report as the biomedical and the biopsychosocial models.

From the biomedical perspective, CFS/ME is 'a condition like many other medical conditions where illness results from a specific pathological defect in physiological functioning, mediated at organ, tissue, cellular and/or molecular level, by as yet undefined mechanisms' (13). The biopsychosocial model, by contrast, 'suggests that once an illness has started, its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process'.

The report's endorsement of the biomedical model marks a significant advance in the medicalisation of the problems of individuals in society and a retreat from any attempt to confront such problems in social terms. It upholds the sort of crude dualism of mind and body from which modern medicine has been gradually emerging over the past 300 years.

Worse, it implicitly endorses the stigmatisation of mental illness, by dogmatically repudiating any recognition of the role of psychological factors in the genesis of physical symptoms.

The biomedical model has proved highly productive where distinctive patterns of anatomical, physiological or biochemical abnormality have been identified: that is to say in the diagnosis and treatment of diseases. Where it has not proved of much value is in advancing the understanding of physical symptoms in individuals in whom no recognised form of pathology can be discovered.

Yet the redefinition of illness as disease has become the dominant medical response to the problem of unexplained physical symptoms, of which fatigue is only one example. Others complaining of symptoms for which no cause can be found are offered labels such as 'irritable bowel syndrome', 'repetitive strain injury', 'fibromyalgia', 'food allergy', or even 'multiple chemical sensitivity'. The proliferation of diagnostic categories in psychiatry reflects the tendency to apply disease labels to a wider range of social behaviour.

Even when they are not, like ME, obfuscatory, the new diagnostic labels are descriptive rather than explanatory. Far from opening up the prospect of treatment, they merely confirm the hopelessness of the sufferer. The labels validate and legitimise the expression of incapacity in medical terms. Whereas diagnoses in the past suggested the limited character of the condition, the new labels imply disorders that are unrestricted in the scope of the symptoms to which they give rise and in the duration of their effects. Post-traumatic stress disorder or recovered memory syndrome, for example, can be expressed in the widest variety of symptoms, which may arise long after the traumatic events believed to have triggered them.

The depersonalised character of traditional diagnoses allowed the sufferer to objectify the condition as something 'out there'. By contrast, a diagnosis like CFS/ME is inescapably personal in character. Every sufferer exhibits a different range of symptoms, and there is no way of objectively confirming or monitoring the course of the illness.

The net effect of the dramatic expansion of the range of medical diagnosis is that, instead of conferring strength on the patient, it is likely to intensify and prolong incapacity. The proliferation of such diagnoses and the tendency to apply them to increasing numbers of people reflects a profound demoralisation of society and a crisis of subjectivity.

Anybody who criticises the biomedical model of ME is caricatured by its advocates as believing that ME does not exist or that 'it is all in the mind'. Yet anybody who has worked in primary healthcare over the past 20 years knows patients who have experienced prolonged and incapacitating episodes of fatigue, together with a range of other symptoms. Whether or not they have CFS or ME, their physical symptoms are all too real. Whatever role the mind plays in the defects of the body, its incapacity is readily apparent.

Advocates of the biopsychosocial model have attempted to develop a way of understanding symptoms of chronic fatigue that takes account of psychological as well as physical factors. Their approach to treatment is commonsensical rather than ideological, leaving aside controversies about aetiology and trying to discover practical interventions that can be shown to have some effect in alleviating symptoms.

Both the biomedical and the biopsychosocial approaches evade the role of social factors in the genesis of CFS/ME. Proponents of the biomedical model do this on principle because for them the biological determination of the condition is a matter of faith. For advocates of the biopsychosocial approach, this is partly a pragmatic decision, to avoid further antagonising the ME lobby, and partly a result of the narrowly psychological focus of much work on CFS.

Yet it is crucial to grasp the wider social and political influences that have contributed to the emergence of CFS/ME if we are to achieve a deeper understanding of this condition - and to devise more effective ways of helping its sufferers.

'Self-pity and self-deception are the great enemies of Mankind' writes medical commentator Theodore Dalrymple in his recent book, An Intelligent Person's Guide to Medicine (14). Yet both are pervasive in modern society, and nowhere more than among patients with ME, above all in the ME organisations. To any observer who takes a historical or sociological perspective on the emergence of novel diseases such as CFS/ME, their origins in the existential distress of their sufferers is readily apparent - as indeed it usually is in the doctor's surgery.

The tragedy of the sufferers is their lack of insight into this process, a deficit that is reinforced by the provision of a pseudo-medical disease label. Whereas according to the new policy of the Chief Medical Officer, doctors are now obliged to collude with the self-deception of ME sufferers, for Dalrymple, it is necessary to 'undeceive' to achieve change. From his humanistic perspective, it is the doctor's responsibility, acting with due circumspection, to 'undeceive the self-deceived'. While the official line ratifies confusion and promotes incapacity, this approach points the way towards enlightenment and recovery.

Dr Michael Fitzpatrick is the author of MMR and Autism, Routledge, 2004 (buy this book from Amazon (UK) or Amazon (USA)); and The Tyranny of Health: Doctors and the Regulation of Lifestyle, Routledge, 2000 (buy this book from Amazon UK or Amazon USA). He is also a contributor to Alternative Medicine: Should We Swallow It? Hodder Murray, 2002 (buy this book from Amazon (UK) or Amazon (USA)).

Read on:

Debating the disease, by Dr Michael Fitzpatrick

(1) A report of the CFS/ME Working Group (.pdf 311 KB), January 2002

(2) While insisting on the crucial importance of an 'early, authoritative and positive' diagnosis on page 35, on page 36 the report admits that 'current diagnostic criteria are useful only for research purposes, and no clinically recognised set of diagnostic criteria exists'

(3) 'The Chief Medical Officer's Working Group Report: A Guide' is available at the Action for ME website

(4) See The high price of Alder Hey and After Bristol: the humbling of the medical profession, by Michael Fitzpatrick

(5) 'Chronic Fatigue Syndrome', p5

(6) A report of the CFS/ME Working Group (.pdf 311 KB), January 2002, p5

(7) See at ME treatment 'must improve', BBC News Online, 11 January 2002

(8) Hystories, Elaine Showalter, Picador, 1998. Buy this book from Amazon (UK) or Amazon (USA)

(9) 'Interventions for the treatment and management of chronic fatigue syndrome', Penny Whiting et al, JAMA, 286; 11, 19 September

(10) 'Chronic fatigue syndrome - trials and tribulations', JAMA, 286:11

(11) Lynn Eaton, 'Chronic fatigue report delayed as row breaks out over content', British Medical Journal, 3324; 7, 5 January

(12) A report of the CFS/ME Working Group (.pdf 311 KB), January 2002, p2

(13) A report of the CFS/ME Working Group (.pdf 311 KB), January 2002, p24

(14) An Intelligent Person's Guide to Medicine, Theodore Dalrymple, 2001, p129. Buy this book from Amazon (UK)

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