The ME militants and me
It is nearly 20 years since I became inadvertently involved in the “ME wars”, the long-running conflict between militant campaigners suffering from chronic fatigue syndrome and the leading doctors in the field. Hostilities have erupted again over the summer as the National Institute for Health and Care Excellence (Nice) felt obliged to suspend publication of a revised edition of its guidelines on managing the condition, amid a spate of resignations from the guidelines committee and recriminations in the press.
More than 250,000 people in Britain are estimated to have chronic fatigue, characterised by extreme tiredness and generally feeling unwell.
Back in 2002 Liam Donaldson, the chief medical officer, endorsed a report approving the compromise diagnostic label of “Myalgic Encephalomyelitis/chronic Fatigue Syndrome”. This contentious label emerged following the resignation from the official committee of four leading clinicians who advocated a “biopsychosocial” perspective, rather than the narrowly “biomedical” approach favoured by ME activists. As a GP struggling at the time with several patients suffering from chronic fatigue, I wrote an op-ed in the British Journal of General Practice entitled, “The Dangers of Cartesian Dualism”. I observed that “in their dismissal of psychology and their fixation on the minutiae of immunology, the ME organisations endorse the dualism of mind and body from which modern medicine has been gradually emerging over the past 300 years”.
I was concerned that by dogmatically repudiating any recognition of the role of psychological factors in the genesis and treatment of physical symptoms, ME advocates implicitly endorsed the stigmatisation of mental illness.
I argued that “when they claim that ME is a genuine and real illness, they imply that symptoms for which no organic cause can be found are therefore false, fraudulent or imaginary”. I was also concerned that they rejected psychological or physical therapies from which I had found many patients benefited. The current dispute follows strikingly similar lines. A coalition of ME campaigns led by the Countess of Mar, a figure I believe to be preposterous and who attributes her own symptoms of chronic fatigue to organophosphates in sheep dip, enthusiastically support the proposal in the new Nice draft guidelines to withdraw approval for “Graded Exercise Therapy”.
Though this has become the most widely used intervention in CFS, the new draft claims a “lack of evidence for effectiveness”. This leaves many sufferers from chronic fatigue, now including many with long Covid, with no prospect of improvement.
Patients with chronic fatigue may have been badly treated by the medical establishment in the past, but they have also been ill-served by the ME campaigns.
The very scientists and clinicians who have devoted their energies to researching and treating patients have been subjected to personal and professional intimidation through vexatious litigation and excessive use of “freedom of information” requests, with the result that some have abandoned the field.
Given the difficulties that have attended the protracted process of trying to achieve a consensus around the new guidelines, an early resolution seems unlikely.
In the crossfire
Disputes have meant patients, including those with long Covid, lose out
One consequence of my article on ME/CFS in 2002 was that I became a target of ME activists. One devoted a chapter of a book on the subject to abuse, labelling me – among others – as a “Wessely lieutenant”. At the time I did not know Simon Wessely, then a researcher in this area and, as such, a bête noire to the ME campaigners, but I have subsequently been disappointed to discover that neither pension nor campaign medals are available.
In his recent book, Head First: A Psychiatrist’s Stories of Mind and Body, Alistair Santhouse, a former colleague of Wessely’s at the Maudsley Hospital, describes him as “an extraordinary man, a genius”. After a distinguished service in the ME wars, Wessely, now a professor and a knight of the realm, has retreated from this field but continues to play a prominent role in the medical world, currently presenting the Royal Society of Medicine’s regular Covid podcasts.