Scotland Herald: 'Chronic fatigue, 'mass hysteria', and Dr Melvin Ramsay', by Helen McArdle, 2024

A Scottish piece shared by ME Association today.
The 1 cleverly worded comment is presumably a BPS proponent and criticises it for stigmatising people with psychological illnesses as not being all in the mind, suggesting we should "keep an open mind" (that ME is too).
£ https://www.heraldscotland.com/news/24492005.chronic-fatigue-mass-hysteria-dr-melvin-ramsay/

Archive https://web.archive.org/web/2024080...ronic-fatigue-mass-hysteria-dr-melvin-ramsay/

 

I suspect Jim White is some sort of GP BPS hanger-on chappy. Psychosomatic is quite different from psychiatric.

We saw this piece before I think?

I think it is time people stopped dredging up this stuff about McEvedy and Beard, as if it was relevant to ME/CFS, when it was about the acute RFH illness. Historically has some relevance maybe but why perpetuate the confusion of concepts? ME/CFS is not an encephalitis with neurological signs. The BPS position is not now based on McE and B. It is just a intellectualisation of the popular reaction to people who say they are ill when nobody can find out what is wrong.

 

Re "the 1 very cleverly worded Comment" (by 'Jim White') underneath The Herald article finishes with the sentence:


"I don't know what causes ME but it is not a criticism to say its origins could be, for at least some people, psychological. Let's keep an open mind."


That same sentence, word for word, has appeared in the comments of more than one UK national papers (Comments to articles on the Inquest in the last 2 weeks).

I remembered reading it because of the weird 'let's keep an open mind' (yep, lets keep our minds so open that our brains fall out) which craftily urges readers to continue the 'physical or mental debate'. Every word of that sentence is crafted. And repeated. So, I don't know where the sentence originated but, it is a criticism to say that sentence is no innocent reflection by any uninformed member of the public.

But the whole of the comments that sentence appeared in were different from the rest of 'Jim White's' in the Herald

.

 

Yes it felt like a staged stock answer to deliberately undermine.
Its difficult as the general public cannot possibly grasp the full history of the BPS conceptual evolution. I am a meep and struggle with all the intricacies and nuances half the time myself.

(ETA I agree it would be nice to change the narrative of the story to be about history of the physical findings growing body of evidence and progress towards a better understanding through decode )

I thought the article tried to give a reasonable summary but could perhaps have emphasised they never saw a patient, and the now signficicant body of evidence showing physical abnormalities. Decode would never have been funded had psychological treatments been shown effective.

I am in two minds as to whether it's worth us crafting an equally clever stock answer to these gaslighting comments for the sake of other readers. (Needs a better brain than me). This is where really we need a PR capability to advise the best strategy.

 

When I first started to read about ME/CFS (initially on forums), McE and B came up in my reading quite early on and I was shocked by their "contribution" to ME history. What didn't come up, and really should have in my opinion, is that they never saw a patient. This should be stressed in reply to anything about McE and B and everything that derived from them and their four page report , because it makes clear that they were just making it all up to fit their own preconceptions about patients in general, and women in particular.

I'm not sure about this, but weren't they young and inexperienced doctors as well? Or did I just make that up?

Another thought occurs...

How would history have changed if the "Royal Free Disease" had struck a men's prison or a regiment of soldiers instead of a hospital where the nursing staff were all female?

 

McEvedy was a junior doctor who wrote his Royal Free outbreak paper as his PhD thesis, without ever having examined a patient, and Beard was his senior. His obituary here gives a rather glowing summary of that topic: https://www.bmj.com/content/bmj/331/7520/Obituaries.full.pdf . A book by Dr Byron Hyde talked about having interviewed McEvedy in his later days, in which Hyde asked him why he did it. McEvedy's reply was 'It was an easy PhD, why not?' Argh.

Indeed. It would probably have been long since figured out if that was the case. Unless Wessely, what with his interest in 'military psychology' if it was a soldier regiment, got onto it and declared it mass hysteria like he did with GWI, of course.

 

But that does not invalidate hs observation. The account is of what was written in the notes at the time. McE and B identified patterns of findings that did not reasonably add up to structural neurological deficits.

I think their findings are probably perfectly valid. The first key point, though, is that what they were studying has nothing whatever to do with ME/CFS as we now understand it. I also doubt it has that much to do with the BPS position, which is simply the standard social response to someone who complains but has no objective abnormality, rationalised into some psychology.

The second key point is that if the findings McE and B report were due to suggestibility, as they propose, then it seems much more likely that the suggestibility was largely fuelled by the doctors, not the patients themselves. Everyone may thought they had some strange form of polio because the doctors looking after them thought that and spread the word. Mass medical hysteria if you like. And Acheson's 'encephalitis' idea was more of the same.

Moreover, I suspect that that medical hysteria is still a significant problem in that patients are still being told that they have ME as if it were the illness studied by McE and B - some sort of neuroinflammation. The evidence we have so far is strongly against that.

 

It is amazing how one 'easy PhD' had so much power. Can only guess it tied in nicely into a medical establishment/government/health insurance provider agenda for trivialising inconvenient diseases?

 

This is probably the perfect reply to post.!

 

Yes, it is (c) the people were sick, and it was 'mass medical hysteria' in the sense that the doctors told them it was neurological when it wasn't, in other words, mass misdiagnosis, but being suggestible and, at that point in history, reasonably terrified of 'atypical polio' the patients may have colluded unconsciously in the eliciting of meaningless neurological signs.

And I did say Mass Medical Hysteria, by which, to clarify, I meant the spread of a belief by and amongst doctors. Any influence of beliefs on patients' reporting of symptoms would be by-products, but might contribute significantly to the end result. Although they were not imagining they were sick they would almost certainly have been imagining that they had a terrible neurological disease.

I think people have misunderstood just how complicated the psychological situation would have been and of course E and B completely failed to appreciate the complexity.

Long Covid is quite different. It has been doubted whether people are ill at all. I think it would be quite difficult for doctors to persuade well people that they feel ill. On the other hand if people are feeling very ill from an acute viral infection I suspect it would be quite easy for doctors to persuade them that they had a previously unknown variant of polio causing neurological damage.

The problem remains relevant in that vast numbers of people now believe they have Ehlers-Danlos syndrome when they don't, because of the beliefs of a tiny number of physicians who have dreamt up a story without any evidence. And I think this is of direct relevance to the feeding problems in sever ME/CFS. The gastroenterologists have been surprised to note a rapid increase in 'functional GI problems' in people with 'EDS' and as a pushback have openly called for a stop to feeding such people. It even gets a mention in the RCP advice on feeding difficulties and may be at the heart of recent refusals to feed those who need to be fed.

 

The technology in 1955 was far too primitive to assert this with any confidence. Let alone in the late 19th century when Freud started making this stuff up. It still is, and will be for years to come. So their observation is only valid in the sense that they didn't find any, but they didn't leave it at that, which is what invalidates their claims. The rest is pure sophistry.

It's roughly in the same category as the "canals" on Mars. Something that should be a bit funny and inoffensive in hindsight. Or sharknado. Frankly sharknado makes every bit as much sense.

However I disagree that this thesis did that much damage. They were just two randos. It takes a lot of people to do this much damage. It takes more than one person, or one source, to accept an obviously nonsensical lie that violates many of the fundamental concepts of the profession, as well as basic rules of logic and reasoning.

 

I disagree. Enough was known about neurological pathways in the nineteenth century to identify patterns of signs that make no pathological sense. If you spend five years doing neurological examinations every day of the week you come to understand what the patterns are, just as you notice that something is written by someone not using their first language.

Patterns of signs that don't make sense are uncommon but all doctors meet them from time to time. It is reasonable to presume that they arise for non-structural reasons in the brain but beyond that is bullshit. It is a mistake to confuse the reality with the bullshit.

 

Technology undoubtedly would have helped in some of the Royal Free cases which were a very mixed bag - if I recall correctly McE & B noted a case who subsequently died and was found to have lesions consistent with multiple sclerosis; that is the type of case that would have been picked up easily on MRI.

But some of the other cases were clearly not consistent with - for want of a better term - an organic lesion and technology would not have made a difference in those cases. For instance the glove-pattern anaesthesia terminating at the wrist - you know that some of the cases were not consistent with real patterns of innervation and therefore must have represented a higher-level disorder.

 

I think that is highly plausible. They thought they were studying the phenomenon of 'hysterical' chronic fatigue aka ME/CFS but made the mistake that everyone else has been making of equating that to the interaction between acute ill patients and doctors in 1955.

Thinking back to discussions over decades with my mother, who knew it as 'Royal Free Disease' as a virologist in the 1960s, I think the conflation of the putative acute encephalitis and the long term debility has been pervasive all that time. Scepticism about one and about the other were not separated in people's minds.