Debating the disease

‘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”. Anybody who has worked in primary health care 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.’

(ME: the making of a new disease, Dr Michael Fitzpatrick, spiked, 17 January 2002)

I am grateful to the large number of people who have responded to my article on ME/CFS, particularly as many are sufferers. Given the striking similarity of many of the letters, I thought it best to respond to some of the common themes.

Because many of my critics attribute to me positions that I do not hold and have not argued, I begin by restating my conviction that the symptoms of sufferers from ME/CFS are genuine. I do not hold any of the following views:

— that ME does not exist

— that ME sufferers are stupid, slothful, delusional or feckless

— that ME is adopted as a conscious strategy to escape from work or other commitments.

I do not claim to be an authority on ME/CFS. I have been working as a general practitioner for nearly 20 years, during which time I have had several patients with ME/CFS, some of whom I have got to know fairly well, others with whom I have had only intermittent contact.

The most immediately striking common feature of the responses to my article is their tone of anger and bitterness. They express an intense hostility to any questioning of the biomedical theory of ME/CFS, and anybody who publicly raises such questions is consigned to a rogues’ gallery. This already includes US literary critic Elaine Showalter and the British psychiatrist Simon Wessely, both of whom I quoted. (For the record, I did not quote Showalter as a medical authority, but precisely because she is not a medical authority. And whether or not the ME organisations approve of his work, Wessely is an internationally respected authority on ME/CFS.) Claiming that it is offensive to sufferers to venture a critical appraisal of the biomedical theory means turning this theory into a dogma and closing off further debate.

I am well aware that various neurological, endocrinological and immunological abnormalities have been reported in some individuals with ME/CFS. However, as the recent report to the UK government’s chief medical officer indicates, these abnormalities have not been found consistently in all sufferers, they are of no diagnostic value and they have not, as yet, contributed to the emergence of an accepted pathology of the condition. They may provide useful pointers towards future research, but they do not confirm that ME/CFS is a disease.

The fact that several conditions that were once regarded by medical science as having a psychological origin have subsequently been revealed to have an organic basis is an understandable source of comfort to those who cling to a biomedical explanation for ME/CFS. On the other hand, there is also a long list of conditions that were once believed to have an organic cause but are now considered to have a psychosocial basis: miners’ nystagmus, railway spine (superseded in the age of the car by whiplash injuries), and, most notoriously, drapetomania (the inexplicable tendency of slaves in the American South to run away from their masters).

The argument that ME has prevailed throughout time under different names is sustained by projecting ME into history and rediscovering it in different epochs. This method of ‘reading history backwards’ turns ME into a transcendent metaphysical phenomenon, resulting in an inability to understand either the present or the past.

Sufferers from ME/CFS, like those with other illnesses, are entitled to expect that their doctors listen to them and accept their account of their experience of illness. They are not entitled to expect that their doctors share their beliefs about the nature of this illness, particularly when these lack a rational basis.

Doctors have a professional responsibility to make their own judgements, based on their knowledge of medical science, their clinical experience and their assessment of the particular patient. Contrary to popular prejudice, the patient’s intuition is often wrong when it comes to diagnosis and treatment (nor is the dictum that ‘the customer is always right’ a reliable guide to clinical practice). The danger of the UK chief medical officer’s endorsement of the report on ME/CFS is that it encourages doctors to subordinate their professional judgement to the convictions of sufferers from ME/CFS and their voluntary organisations – to the detriment of both patients and doctors.

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:

ME: the making of a new disease, by Dr Michael Fitzpatrick

spiked-letters: The ME debate