The Medical Independent: Challenging the ME narrative

Wyva

Wyva

Senior Member (Voting Rights)
Opinion piece by George Winter

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.”​

The rest of the article: https://www.medicalindependent.ie/comment/opinion/challenging-the-me-narrative/
 
The focus on McEvedy and Beard is misguided. Most laymen will pick out the phrases that read badly to modern ears. Many physicians will have a different reaction when seeing descriptions of non anatomically congruent glove / stocking neuropathies & so forth. It's irrelevant to what we now consider ME/CFS.
 
The pity is that Winter gets the narrative all wrong. The illness that McE and B diagnosed as hysterical was not ME/CFS. It was an acute epidemic viral illness that led on to what was probably ME/CFS in some cases, just as EBV does. We do not confuse EBV with ME/CFS. We should not confuse ME as studied by McE and B as ME.

McE and B show us details from the notes, and I think it is entirely appropriate that the study is of other peon's notes because that is very relevant to the analysis. The notes show patterns of physical signs, and also accounts of symptoms that most neurologists would be sceptical about as evidence for what they were suggestd to indicate. They look as if they were elaborated account either by the patients or by doctors who were not skilled neurologists. Whether the mass hysteria belonged to the patients or the doctors we will probably never know but it is completely irrelevant to ME.

The situation is complicate, though, by the way almost everyone has inflated things. So, I think it very plausible that when Wessely was suggesting tha ME is just an idea of having 'ME' he was conflating with the RFH cases. And when we have physicians still making that conflation and telling patients that they have the illness with neurological lesions that occurred at the Royal Free then it just makes the whole argy bargy with the psychiatrists worse.

I don't mind if journalists simplify stories but when they perpetuate the wrong story it is frustrating.

Edit: crossposted!
 
The article said:
confront the damage caused by flawed science
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The most salient point is that none of it came from flawed science, it came from flawed beliefs and a process that is a parody alternative to science, built entirely out of logical fallacies. If this had been a scientific process, none of this would have happened. Not that science can't be flawed, but usually when it is, it's because it did not follow the scientific method. All the key 'evidence' takes correlations backwards and assigns them as causes. This is the opposite of science.

The biopsychosocial of illness and psychosomatic ideology are not scientific constructs. They are cultural products of the professional echo chambers of medicine, which compound the misogyny and bigotry of those involved, willing to perceive what they feel they should see even though it's not there at all. The most classic of all errors of judgment, people who end up believing in their own made-up bullshit, unchecked by dysfunctional systems indifferent to their own flaws.
 
Alistair Miller: Given this, it was perhaps sadly inevitable that some people would question whether ME/CFS was a “real disease” or was “all in the mind”. Indeed, the original description of ME at the Royal Free hospital in 1955 was attributed to mass hysteria. Some years later, it was disparagingly known as “yuppie flu”. https://www.theguardian.com/comment...case-highlights-clashing-nhs-narratives-on-me
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The sentence doesn't mean what Miller wants it to mean. He has written that the description was attributed to mass hysteria, not that ME was attributed to mass hysteria. His sentence means that mass hysteria wrote the original description of ME. He might think that too, but from the context it's clear that's not what he meant. He would have had to write something like "Indeed, ME, as described at the RFH in 1955, was attributed to mass hysteria".

Edited to remove "originally" from "originally attributed to mass hysteria", because this leaves it open to what Miller probably meant, ie that ME, as described at the RFH in 1955, was subsequently attributed to mass hysteria.
 
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