ME/CFS: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955, Underhill & Baillod, 2020

From the abstract:
ME/CFS usually occurs as sporadic cases, but epidemics (outbreaks) have occurred worldwide.
Click to expand...

There may also have been a history of cases labeled as "sporadic" because those involved were unaware of just how many "sporadic" cases were occurring.

There was apparently a significant cluster of cases in Southern California in 1983. It wasn't located in an institution like a hospital, but rather in an industry - namely film and television production. It was later called "The Hollywood Blahs" in one article and this was when film director Blake Edwards became ill. Back then, it was initially attributed to chronic Epstein-Barr Virus (CEBV) and was termed the "Yuppie Plague" in one article in New York Magazine because it seemed to be disproportionately hitting prosperous young people in the entertainment industry (they just got the most attention from the press). No doubt, this is the origin of the term "Yuppie Flu."

In "Osler's Web," a case is made that, whatever it was, it spread from Los Angeles to San Francisco and only then reached Incline Village at Lake Tahoe in 1984. It's possible that the cases first came to attention in Incline Village because there were there were so few doctors there that anyone who became ill would wind up seeing them. In larger areas like Los Angeles and San Francisco, "sporadic" cases could be spread so thin that it would be rare for any of the thousands of doctors in the region to see even a single case, let alone recognize a large cluster or "epidemic" in a subset of the population.

Neither I nor any doctor I saw had any idea that this was going when I became ill in 1983. I was living about 50 miles outside of Los Angeles, but I was driving into LA County every day to work in the film industry.
 
I'm doing this mostly from memory, but at the bottom of on Page 35 of the hardback edition of "Osler's Web," Los Angeles internist Herbert Tanney is asked if he had ever seen the "constellation of symptoms" representative of CFS prior to 1983. His reply is "Absolutely not." At the bottom of page 121 and top of 122, Paul Cheney makes a case that Incline Village is most likely seeing seeing something that developed earlier in Los Angeles and San Francisco, and that Incline Village had likely gotten it via earlier cases in Los Angeles rather than the other way around. He also speaks about the number of cases seen in LA being diluted by the number of physicians there to the point where they don't arouse suspicion (although he calculates something like 105,000 possible cases - based on 1.5% of the then population of 7,000,000 in L.A. - which seems like a very large case estimate to me).
 
Colin said:
Not quite. The 1919 Eddington experiment was widely hailed in the press, immediately afterwards, as spectacular proof of the radical, new theory but it didn't actually prove anything. The observational accuracy just wasn't good enough and there were theoretical alternatives. But the supporters of General Relativity were so wrapped up in the beauty of the idea that they took it as proof regardless. It wasn't until the 1960s, the WP article reports, that the matter was really settled. By that time General Relativity had long been generally accepted, if not actually understood. Social dynamics, rather like physical dynamics, can be a complicated, old thing. In that case, popular opinion ran ahead of the science and it might have been entirely incorrect. Might be a lesson in there somewhere, but it's probably complicated...
Click to expand...

I'm not talking about consensus on the matter. I only mean a theory to become accepted as a possibility and not generally ignored with vague and recursive arguments. Consensus finding is a completely scientific process. But the ignorance and defensive attitude from the establishment is simply unnecessary and a sign of bad character. Good and open-minded scientists would appreciate any alternative theory with a deep evaluation instead of stifling it and stigmatizing the authors for trying. By the way, you can see similar things with COVID-19 treatment studies and in Archeology. Any alternative ideas to what is considered the established opinion will be stigmatized. The NYT associated Ivermectin research with conspiracy theories, Trump, describing renowned scientists with long research histories negatively, without mentioning their names and background. Like they were a couple of medical students who were utilized in a political war. Just because the lead researcher accepted the invitation to a Republican-led senate hearing and spoke openly about the issues he faces and the urgency in hospitals. But the establishment loses its significance. Scientists don't rely on their approval as much as they used to be 50 years ago when the internet wasn't a thing yet. In Egypt, however, you still need a lot of political influence and approval from the establishment (i.e. their Egyptology Ministry) if you want to do research on the pyramids. Funny enough, scientists do research on the pyramids with satellites instead.
 
Colin said:
Not quite. The 1919 Eddington experiment was widely hailed in the press, immediately afterwards, as spectacular proof of the radical, new theory but it didn't actually prove anything. The observational accuracy just wasn't good enough and there were theoretical alternatives. But the supporters of General Relativity were so wrapped up in the beauty of the idea that they took it as proof regardless. It wasn't until the 1960s, the WP article reports, that the matter was really settled. By that time General Relativity had long been generally accepted, if not actually understood. Social dynamics, rather like physical dynamics, can be a complicated, old thing. In that case, popular opinion ran ahead of the science and it might have been entirely incorrect. Might be a lesson in there somewhere, but it's probably complicated...
Click to expand...

That big bright flash in 1945 wasn’t enough proof?
 
Jonathan Edwards said:
I doubt that recollections of an illness 65 years ago are much help in this case.
Click to expand...
Its very hard to make a good scientific point this far after the initial outbreak. We mostly just have the old studies. Currently we have COVID long haulers as potential subjects to investigate. This is the best current outbreak lead.

Now any potential outbreak for which biobank samples are kept might indeed be fruitfully investigated long after the actual outbreak, as new techniques are developed and questions are raised. I really hope many long hauler patient samples are being stored.
 
It must be remembered that there is a continuity from the RFH outbreak to today. When I joined the ME Association in 1985 Dr Ramsay was still looking at patients and answering questions in the magazine.

There were members who had become ill then and people who had become ill in the years since. There was never a break where people who were new to the disease were not benefitting from the experience of old hands.

The disconnect came with the invention of CFS and takeover by the BPSers. Before that there were disagreements about treatments but a consensus of what the disease involved, especially the way that exercise/ exertion is at the root.

As we discuss symptoms here it is exactly the same as the discussions in 1985 especially the stranger, less mentioned ones where we suddenly realise they are common after years of fatigue being the only consideration.
 
Trial by Error by David Tuller - New Study Reports First-Hand Accounts of 1955 Hospital Outbreak

I love medical history, so I find this paper valuable and enlightening. Unfortunately, we will almost certainly never have conclusive proof of a causative agent. Nor will we ever be able to fully deconstruct what happened during those chaotic months in 1955. But eyewitness accounts, even though filtered through decades of time, add texture and nuance to our understanding of what people experienced at the time.
 
Kalliope said:
Trial by Error by David Tuller - New Study Reports First-Hand Accounts of 1955 Hospital Outbreak

I love medical history, so I find this paper valuable and enlightening. Unfortunately, we will almost certainly never have conclusive proof of a causative agent. Nor will we ever be able to fully deconstruct what happened during those chaotic months in 1955. But eyewitness accounts, even though filtered through decades of time, add texture and nuance to our understanding of what people experienced at the time.
Click to expand...
That's a fine Twitter account. Always thought so.
 
chrisb said:
My initial impression is that it is strange that the 1973 paper, and the apparent aanomalous eidence presented, was not referred. Not that it would help the case for hysteria, but for the sake of completeness.

I think it is also unhelpful that the RFH outbreak is almost never viewed in historical context.

It seems to be suggested that the RFH outbreak was the major influence in the naming of benign ME. This seems not entirely accurate.There are three papers which need consideration. Discussion of the issues seems to have started in the Lancet in 1954 in the edition including a report of the Middlesex outbreak. This was entitled
LEADING ARTICLES| VOLUME 264, ISSUE 6847, P1060-1061, NOVEMBER 2
Not Poliomyelitis

Sci-Hub | The Lancet, 264(6847), 1060–1061 | 10.1016/s0140-6736(54)90614-5 (sci-hub.se)

There was already interest in a number of abnormal cases and it was recognised that a new name was required. This was followed up in the Lancet in 1956 with an article presumed written by Acheson entitled A New Clinical Entity

(1956). The Lancet, 267(6926), 789–790. doi:10.1016/s0140-6736(56)91252-1
sci-hub.se/10.1016/s0140-6736(56)91252-1 (sci-hub.se)

This paper suggested the name benign myalgic encephalomyelitis but appeared to add the RFH to an already extant body of work

Acheson returned again to the matter in a letter to the Lancet in 1957 entitled Benign Myalgic Encephalomyelitis
The Lancet, 269(6973), 834–835. doi:10.1016/s0140-6736(57)90999-6
sci-hub.se/10.1016/S0140-6736(57)90999-6 (sci-hub.se)

in which he indicates that the suggested name had already been adopted to describe a number of cases in Coventry

Galpine, J. F., & Brady, C. (1957). BENIGN MYALGIC ENCEPHALOMYELITIS. The Lancet, 269(6972), 757–758. doi:10.1016/s0140-6736(57)91024-3
sci-hub.se/10.1016/S0140-6736(57)91024-3 (sci-hub.se)

Although we tend to think of the RFH as being the inspiration for the new name the contemporaneous documents suggest otherwise. McEvedy and Beard seem only to have been playing with the problem. If there were doubts about these cases it would have been entirely appropriate to enter into correspondence at the time. From some angles the M and B papers appear merely to be a fighting of the third battle of the Queen's Square Chair.
Click to expand...

Fascinating history. There were reportedly several cases in LA in the early 1930s. Can't look that up right now to note the link.
 
DokaGirl said:
Fascinating history. There were reportedly several cases in LA in the early 1930s. Can't look that up right now to note the link.
Click to expand...

My memory is fading fast but when I was looking at the papers I formed the impression that the myth of the outbreak confined to the LA Hospital was simply wrong. It was an artefact of a report compiled about the effects on staf of the outbreak within the hospital. Inevitably it was going to report on the outbreak amongst the staff. There were other papers- I think one was Walker and Walker- reporting what appeared to be more widespread community cases.
 
DokaGirl said:
There were reportedly several cases in LA in the early 1930s. Can't look that up right now to note the link.
Click to expand...
No, there were two early cases (1932?) and then hundreds more (I think 1934). The detailed US government report also hinted there were thousands of undocumented cases outside of the LA county hospital. I read this report some years ago. Its about fifty pages long if I recall correctly.

We have ample long term ME patients to study, but investigations during a pandemic require a current pandemic. We have something like that right now, whether or not long COVID is ME or not.
 
There is, somewhere towards the end of the 1959 Acheson paper, a very telling reference. He indicated the probability that sporadic cases
would occur in the community, but indicated the difficulty that there would be in distinguishing them from hysteria. There the matter seemed to be left.
 
alex3619 said:
No, there were two early cases (1932?) and then hundreds more (I think 1934). The detailed US government report also hinted there were thousands of undocumented cases outside of the LA county hospital. I read this report some years ago. Its about fifty pages long if I recall correctly.

We have ample long term ME patients to study, but investigations during a pandemic require a current pandemic. We have something like that right now, whether or not long COVID is ME or not.
Click to expand...

Ah, @alex3619 thanks for this. I was indeed thinking 1934, Guide's honour. But didn't want to commit for sure to a date, as the ME memory thing can be tricky. Looks like my interpretation of early 1930s and yours don't completely jibe. But close. :)

And, yes, let's hope much study carries on with our current pandemic.
 
If someone can make any sense of this word salad I'd be really impressed, but to me it's a very good representation of the kind of people who believe in this kind of BS. The kind of delusional rant you'd expect screamed on a street corner, or a psychiatry conference, I guess. At this point, I see zero difference between the nonsense about "woke" and "mind-body" or "brain-body". It has the same roots in reactionary unreason and being mad at their own imagination.

Unless the bio is wrong, this person is "Ph.D. @univmiami Developmental & Evolutionary Psychopathology. Measurement Science & Psychiatric Nosology."
We are living through a period of social contagion, mass hysteria, & Gnostic cultish delusion. COVID, gender ideology, Ukraine. The examples are numerous. The precedent is real. Public acknowledgement of this empirical reality is crucial for humane societal functioning & protection of adolescents. Continued denial will be catastrophic.
Click to expand...
Beneath is a picture of the McVeddy and Beard Royal Free paper.

 
rvallee said:
If someone can make any sense of this word salad I'd be really impressed, but to me it's a very good representation of the kind of people who believe in this kind of BS. The kind of delusional rant you'd expect screamed on a street corner, or a psychiatry conference, I guess. At this point, I see zero difference between the nonsense about "woke" and "mind-body" or "brain-body". It has the same roots in reactionary unreason and being mad at their own imagination.

Unless the bio is wrong, this person is "Ph.D. @univmiami Developmental & Evolutionary Psychopathology. Measurement Science & Psychiatric Nosology."

Beneath is a picture of the McVeddy and Beard Royal Free paper.

Click to expand...


This guy has been beating and defiling this dead horse for some time. It’s clickbait culture war nonsense manifesting in cacophonous non sequiturs. I’ve seen his points parroted by some other figures historically hostile to us.
 
You must log in or register to reply here.
Back
Top Bottom