Simon Wessely Research & Related Quotes

[fossil]

I couldn't find this posted. Not sure if here is the best place to put it?

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Chronic fatigue syndrome: a 20th century illness?

Wessely, Scandinavian Journal of Work, Environment & Health 1995 (1997)

Abstract (spacing added for easier reading);

The chronic fatigue syndrome has become the fin de siècle illness, now getting similar attention to that of neurasthenia, which dominated medical thinking at the turn of the century.

Myalgic encephalomyelitis was an early term introduced in the United Kingdom in 1957 for this state, but it had little or no public or professional prominence. Until then "chronic fatigue had become invisible", with "no name, no known etiology, no case illustrations or clinical accounts in the medical textbook, no ongoing research activity—nothing to relate it to current medical knowledge".

The reconstruction of chronic fatigue began in the mid-1980s, with the emergence of "chronic Epstein-Barr virus syndrome", which was later converted to chronic fatigue syndrome. The former term, which first emerged in the mid-1980s, is now regarded as a misnomer and should be abandoned.

In the popular American literature the term "chronic fatigue and immune deficiency syndrome" is preferred by the most active of the patient lobbies, while myalgic encephalomyelitis continues to be the usual label in the United Kingdom.

The relevant research linking chronic fatigue syndrome with somatization is reviewed in this article. Understanding the nature of somatization can still shed some light on the meaning of chronic fatigue at the end of the 20th century.

https://www.jstor.org/stable/40966699?seq=1#page_scan_tab_contents

 

[Mithriel]

Myalgic encephalomyelitis was an early term introduced in the United Kingdom in 1957 for this state, but it had little or no public or professional prominence. Until then "chronic fatigue had become invisible", with "no name, no known etiology, no case illustrations or clinical accounts in the medical textbook, no ongoing research activity—nothing to relate it to current medical knowledge".

No matter where you stand this is at best disingenous at worst .... well.

The term Myalgic encephalomyelitis was brought in to describe an epidemic disease which had occurred in many countries going back to the 1930's. It had nothing to do with "fatigue states" any more than measles did. The cause may not have been pinned down by the crude biological tests of the day (not unusual) but it was recognised when it occurred.

By the mid eighties there was discussion of whether epstein barr led to the same disease, he is almost right about that though this was the time when it was realised that ME as seen in the epidemics happened sporadically as well.

Despite SW and Elaine Showalter's book and talk show circus promoting it, the only association with the millenium or fin de siècle is that people with ME lived through it like everyone else in the world.

Self serving distortions of the truth disgust me.

 

[rvallee]

a 20th century illness?

Not even sure what would be the point here. Most illnesses are "20th century" in the sense that before then we did not understand enough to know about most. Modern medicine pretty much began in the early 20th century, before then medicine did way more harm than good (BTW, watch The Knick, a series on that and it's amazing). That silly argument makes no sense whatsoever and anyway the foundations of his preferred somatization model pretty much established themselves in the early 20th century so, uh, "Somatization: a 20th century illness?". Actually, yeah.

By that logic, all genetic diseases should be considered icky because, well, "20th century". That's bad now. Simon says so.

Wessely's career could almost be mistaken for advanced performance art, maximally trolling with nonsense and almost aggressive willful ignorance as a test of what one can get away with, except the system embraced the ideas instead and now the performance art has become harmful ideology.

 

[chrisb]

In his 1997 book chapter 15.5 is entitled CFS is a twentieth-century disease.

Whereas chapter 15.6 is entitled CFS is not a twentieth-century disease.

 

[DigitalDrifter]

View attachment 2610

Simon says...........

Applies to all BPS threads.

 

[Mithriel]

Neurasthenia was seen as a disease caused by the weakening effects of living in an industrialised society. The "back to nature" ideas of the early 20th century were a response to this. Walking holidays and such like were very popular.

Despite industry closing down in most places the idea obviously lives on.

 

[rvallee]

"In addition we believe that understanding of the post viral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it. Though medical training affords insight into the subjective effects of illness, it is axiomatic that objectivity is not similarly enhanced."

 

[rvallee]

Copied post

Agree with all this.

Somewhere on S4ME there is a thread which lists all the things that SW has said which are very close to saying it’s all in the mind. Maybe someone will be able to find and share it.

Regarding the SW quote above, did you see the replies to your post that I linked to? The photocopy of the transcript on the Margaret Williams website looks pretty convincing. SW has challenged many of her claims but as far as I’m aware he’s never challenged this.

Got a few with their sources.

I guess it could be fair to say that they said it's behavioral, rather than psychological, but to me that's a distinction without a difference. I don't buy that they genuinely think it's relevant, or they wouldn't have spent this much energy inventing a concept completely detached from them.

There are plenty of quotes that openly mock the role of infectious triggers, as merely something that triggers our obsessive behavior. We've seen it again with Long Covid being blamed on lockdowns and trauma instead of, you know, the freaking virus almost everyone has had multiple times. These people just know not to say the quiet part loud in public, but I have zero doubt that to them, it is "all in the mind" and purely psychological.

I don't see the point in giving them credit when they more than earned never deserving the benefit of the doubt. Tobacco executives never slipped in saying that they knew their product was deadly, but in private correspondance of course they knew. And of course what people do matters far more than what they say.

 

[MSEsperanza]

Searching for a quote on the recovery treshold in PACE I only retrieved this similar quote:

Is think this is it (in bold in the second tweet) isn't it?


“They changed the recovery measure because they realised they had gone too extreme and they would have the problem that nobody would recover.”

1. Anyone happened to save an image of the quote?

2. Does anyone have an idea what other quote I'm looking for and can add it here? If I recall correctly, someone did a transcript of an interview, including noticing that the audience laughed at SW's explanation.

 

[Robert 1973]

Searching for a quote on the recovery treshold in PACE I only retrieved this similar quote:



1. Anyone happened to save an image of the quote?

2. Does anyone have an idea what other quote I'm looking for and can add it here? If I recall correctly, someone did a transcript of an interview, including noticing that the audience laughed at SW's explanation.

I’m not sure I understand your questions. The images of the quotes are in the tweets, including the references to the audience laughing.

Images of transcripts from Tweets:

 

[MSEsperanza]

I’m not sure I understand your questions. The images of the quotes are in the tweets, including the references to the audience laughing.

Ah, Thanks. Couldn't see the tweets and don't know why I thought it referred to something different.

So it's that: S. Wessely, Standing up for Science panel discussion, March 2017, tweet by Janet Eastham.

Now that I could see the one tweet to which you posted the link I searched the forum for the journalist Janet Eastham and found another post citing her transcript and others of Wessely's related outputs:

Just thought it could be helpful to have the following quotes in one post.

Esther12 said: ↑

I just thought I'd see how the protocol changes were described on the PACE FAQ: (there now seems to only be an annoying link for this: https://www.qmul.ac.uk/wolfson/research-projects/current-projects/projects/#faq )

For their primary outcomes they say the change was : "before any data was analysed".

For the recovery outcome they say the change was: "before the analysis [occured]".

Esther12 said: ↑

I think that this is another example of White trying to be clever with his language.

Indeed. Plus, it was not necessary to have analyzed data but was sufficient just to have had a look at some data in order to become afraid that some of the gathered data might not show what they were supposed to show.

While Wessely's language is too obviously self-revealing:

large donner said: ↑

Wessely:
In essence though they decided they were using a overly harsh set of criteria that didn’t match what most people would consider recovery and were incongruent with previous work so they changed their minds – before a single piece of data had been looked at of course. Nothing at all wrong in that- happens in vast numbers of trials. The problem arises, as studies have shown, when these chnaged are not properly reported. PACE reported them properly. And indeed I happen to think the changes were right – the criteria they settled on gave results much more congruent with previous studies and indeed routine outcome measure studies of which there are many. *(1)

obeat said: ↑

Why did the results from PACE have to be CONGRUENT with other studies?
Surely every study should be independent? Unless of course PACE was about to overturn the results from all the previous trials, and void the GET hypothesis.

Yep. If he had said "comparable", but no, "congruent"....

And then, in plainest language...

"They changed the recovery measure because they realised they had gone too extreme and they would have the problem that nobody would recover." *(2)

---

*(1) S. Wessely, Sept 23, 2016 at 7:13 am, comment on J. Rehmeyer:
Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back, Sept 21, 2016, https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/comment-page-6/#comment-56390
, posted by @large donner

*(2) S. Wessely, Standing up for Science panel discussion, March 2017, tweet by Janet Eastham, posted by @Sly Saint / @Barry / @Robert 1973, tweet here: https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-78#post-362451 / images of transcripts here: https://www.s4me.info/threads/simon-wessely-research-related-quotes.1304/page-4#post-534498


Edited to add link to Robert's post as link to Barry's post doesn't work anymore.