Challenging the ME narrative

The time has come to confront the damage caused by flawed science and give ME the recognition it deserves

Writing in The Guardian in July, Dr Alastair Miller – who has “… been involved in the diagnosis and management of this condition since the mid-1980s…” – addresses the clashing narratives on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In response, Dr David Tuller (PhD), of the University of California’s School of Public Health, describes Miller’s essay as “a disgraceful display of ignorance, hypocrisy, and historical revisionism”.

Although Tuller exposes many of the article’s failings, the following sentence in Miller’s tale deserves proper scrutiny: “Indeed, the original description of ME at the Royal Free hospital in 1955 was attributed to mass hysteria.” One might infer from this that the medical staff at London’s Royal Free attributed ME to mass hysteria in their original 1957 report (BMJ, 19 October 1957). They didn’t. Rather, the attribution appeared in a reconsideration of the episode by McEvedy and Beard (BMJ, 3 January 1970). They wrote: “The occurrence of a mass hysterical reaction shows not that the population is psychologically abnormal, but merely that it is socially segregated and consists predominantly of young females.”

At least two sources undermine McEvedy and Beard’s arrogant account. First, Compston (Postgrad Med J, 1978; 54:722-724) states: “McEvedy and Beard’s conclusions ignore the objective findings of the staff of the hospital of fever, lymphadenopathy, cranial palsies, and abnormal signs in the limbs.” Second, Hooper (J Clin Path, 2007; 60: 466-471) explains that a certain Dr Byron Hyde “visited McEvedy to discuss his [McEvedy’s] thesis and to meet people involved in the Royal Free outbreak. McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records.”

The Irish ME Trust supplies added context, reproducing Hyde’s presentation to the International ME/CFS Conference in May 2006. Hyde visited McEvedy – whose PhD through Oxford University drew on the Royal Free outbreak – and asked why he had concluded mass hysteria without any careful exploration of the basis for his thesis. McEvedy replied: “It was an easy PhD, why not.” Hyde then asked McEvedy if he still thought ME had a hysterical basis. “‘Of course,’, he said, ‘they were just a group of hysterical people.’”

This background to Miller’s single-sentence gloss-over of McEvedy and Beard’s conclusions evokes Orwell’s view of political language, which is, he wrote, designed “to give an appearance of solidity to pure wind”. Unsurprising, then, that Hyde comments: “It is most unfortunate that neither Oxford University nor the British Medical Journal refused… publication…. Both institutions owe more than an apology to patients devastated by ME.” Indeed they do.

Yet notwithstanding McEvedy’s influence in its launch, the biopsychosocial ME model bandwagon started rolling, and those aboard included an honorary clinical assistant at the National Hospital for Nervous Diseases, London – (then) Dr Simon Wessely – whose review of six ME-related books opined that if the publications were to be successful “… a little more psychology and a little less T-cells would be welcome” (BMJ, 1989; 298: 1532–1533).

Well, we’ve had a lot more psychology since then… with disastrous consequences for ME sufferers and the scientific process. For instance, in ‘ME/CFS: Past, present, and future’, Weir and Speight (Healthcare, 2021; 9:984) note: “As with previous examples of medical dogma, the belief that ME/CFS is ‘psychological’ will eventually be consigned to the dustbin of medical history, alongside miasma theory and suchlike. Compelling evidence of physical causation is now accumulating, but the authoritarian cabal who promoted the psychological dogma are even now trying to defend it in the face of irrefutable scientific evidence to the contrary.”

Significantly, some irrefutable scientific evidence to the contrary pertains to T-cells: The ones that (now) Sir Simon Wessely wanted to hear “a little less” of. Thus, the title of Gil et al’s recent paper is ‘Identification of CD8 T-cell dysfunction associated with symptoms in ME/CFS and Long Covid and treatment with a nebulised antioxidant/anti-pathogen agent in a retrospective case series’ (Brain, Behaviour, and Immunity – Health, 2024; 36: 100720). Or there is Mandarano et al’s ‘Myalgic encephalomyelitis/chronic fatigue syndrome patients exhibit altered T-cell metabolism and cytokine associations’ (J Clin Invest, 2020;130(3):1491-1505).

And we haven’t even mentioned the infamous PACE trial, judged by Weir and Speight (above) as “an egregious and expensive exercise in scientific sophistry whose methodology was so seriously flawed that it is now used as an example of how not to conduct scientific studies”.

We can expect Tuller’s current speaking tour of Ireland to assert the civilised – and civilising – values of proper scientific inquiry and help slay the dragon of medical dogma.

In the context of ME, I think a lot less psychology and a lot more humility from some quarters would be welcome.