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

From the abstract:

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.

 

In @ScottTriGuy 's recent interviews with Hilary Johnson didn't she refer to earlier cses in LA in about 1979 or 80. There seems too little detail on all this. Probably it is impossible to put together the evidence.

 

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).

 

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.

 

That big bright flash in 1945 wasn’t enough proof?

 

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.

 

That's a fine Twitter account. Always thought so.

 

Code:

https://twitter.com/TomKindlon/status/1353436964926709760

 

Heh...

https://twitter.com/user/status/1384483709961883648

 

At this point, over 3 decades for me, having PVFS for 2 or 3 years would have been a cake walk!

 

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

 

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.

 

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.

 

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.

 

My interpretation also. Although I'm not sure if the notion of hysteria was postulated at the time? Or only all those 15 years later?

 

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.

https://twitter.com/user/status/1679636736740151303

 

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.