Article: 'Is standing up for expertise a fool’s errand?' - Simon Wessely still being portrayed as the 'victim'

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Article:
https://www.timeshighereducation.com/features/standing-expertise-fools-errand

another victim is Simon Wessely, professor of psychological medicine at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. When he began working on chronic fatigue syndrome (CFS) in the late 1980s, he felt that patients were getting a raw deal. If they were believed at all, they were mostly told to get bed rest and hope for a medical breakthrough, but research by Wessely and his colleagues showed that two approaches, graded exercise therapy and cognitive behaviour therapy, could help them manage their symptoms.

However, one patients’ group believed that Wessely was not treating CFS – also known as myalgic encephalomyelitis, or ME – as a serious illness. “We published our first paper and immediately got a lot of pushback…Right from the start, a small group of people started telling lies about us,” he says. “I was accused of throwing a boy who had CFS into a pool to see if he would sink or swim…After a break-in at the office of a UK patient group, in which computers were stolen, I was accused by Dutch ME activists of being responsible…Very early on, I learned that often when I was going to give a talk, the organiser would be sent a dossier about how vile and evil I was.”

Also circulating was one of the conference slides that he had posted online – except that his text had been changed “to reverse my meaning. Someone had downloaded it, changed it, and uploaded it again,” he says. “Now when people ask if I’ll send my slides round – which is quite normal practice – I have to say ‘I’m sorry, but no.’”

Threatening phone calls and hate mail resulted in police involvement, and even though Wessely gave up research on CFS years ago, “the stalking continues. It’s quite painful. I can’t deny that…Things have got easier in recent years, but it’s never over.”

Wessely now does research with the military in Iraq and Afghanistan. “I once told a meeting that I now feel safer. People took it as a joke – it wasn’t,” he says. “What I meant was, I feel emotionally safe. I don’t feel constantly stalked and harassed.”
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Wessely attests that he never feared for his job when he was under attack for his CFS work, and King’s provided him with lawyers whenever he needed them. Others, however, were not so lucky.
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But scientists themselves also have to be ready to combat false narratives. By his own account, Wessely realised this much too late. “The ex-police officers we were working with had also worked with scientists on the end of the attacks from animal rights groups,” he recalls. “They said to us: ‘We knew what those scientists were doing: they were trying to find a cure for Alzheimer’s etc. But we don’t know what you are doing.’ We didn’t respond to the things that were said about us, and that made people question whether it was true.”

Eventually, Wessely created a website rebutting opponents’ allegations and giving examples of where his writings or presentations had been deliberately transformed. “It has helped a bit, but it was way too late,” he concedes. “Our view was that the science would speak for itself. Well, the science remains good, but I am afraid it didn’t speak for itself.”

In retrospect, Wessely believes that he should have tried harder to engage with the more reasonable activists. “As I grew older, I learned that you can spend time with people who agree with you – in my case, the neurologists, the physicians, the journalists – but it’s wasted. You need to spend more time with people who don’t agree with you.”
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I think it is actually pretty interesting how hard it still is to take apart his writings in a meaningful way because he - as far as I know at least - always lies openly about what he actually does by saying things that would be completely reasonably if it wasn't him saying them. E.g. the part about people not being taken seriously being a problem is true, the part about him being attacked for not treating ME as a serious illness is true, the part about the story going around that has him throw a kid into a pool while it is at least very questionable that anything like that ever happened (at the very least the way this story is told) is true. He elsewhere stated that benefits should not be tied to people getting treatment for their illnesses and so on.

The problem, as we know, arises from the fact that treating people with treatments that have null results or are damaging is not 'taking them seriously', getting pushback for bad papers is what you are supposed to get, I don't know if the story about the boy and the pool is true but he may well have intented that himself as he does not look like a fellow who has the upper body strength to lift someone out of a wheelchair and leaving out the part about people suddenly getting letters from their insurance companies that deny them payments after he talked to them behind closed doors... Well, same shenanigans, different day I guess.

Can we compile a fact-based sheet to simply counter the points he always makes with whatever is substantiated or something? No one in a lay population gets into the entire debate around how valid subjective outcome measures are in certain research settings, this will always seem like an academic debate to be had among academics. Like, a short dossier we can send people to show them how vile and evil that guy is because he regularly seems to say one thing and then do another, but still so matter-of-fact-style that it is clear the gripe isn't so much with him as a person but simply the annoying things he did and does. Like, not ever responding to the actual questions (it is very noticeable that the entire piece does not go into any of the legitimate gripes with his 'work' even tangentially).

Bullies always present themselves as victims, it is what they do to control the narrative. This is countered by simply stating the reality of things.
 
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Amw66 said:
Who was responsible ?
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It seems to have arisen from the story about Ean Proctor. The allegation was that SW was one of the psychiatric signatories on the section that got EP admitted to the unit where the pool incident happened, and that it was done without him being examined. But no-one really knows whether any of that is true, or just malicious association. Part of the problem is that because he has been so outspoken, enough things get attributed to him that he can clearly deny.
 
Also circulating was one of the conference slides that he had posted online – except that his text had been changed “to reverse my meaning. Someone had downloaded it, changed it, and uploaded it again,” he says. “Now when people ask if I’ll send my slides round – which is quite normal practice – I have to say ‘I’m sorry, but no.’”
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Eventually, Wessely created a website rebutting opponents’ allegations and giving examples of where his writings or presentations had been deliberately transformed. “It has helped a bit, but it was way too late,” he concedes. “Our view was that the science would speak for itself. Well, the science remains good, but I am afraid it didn’t speak for itself.”

In retrospect, Wessely believes that he should have tried harder to engage with the more reasonable activists. “As I grew older, I learned that you can spend time with people who agree with you – in my case, the neurologists, the physicians, the journalists – but it’s wasted. You need to spend more time with people who don’t agree with you.”
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Does anyone know where he has posted the slide corrections?
 
He always tries to shift the focus away from whether the science is actually good or not. This is not what a honest debate looks like.

If he was honest, he would explain for example why he thinks that PACE trial adequately controlled for placebo effects.
 
Dx Revision Watch said:
No specific slides mentioned.
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He also choses his words very very carefully:

“Wessely believes CFS Is a Non Disease”
Here is the claim, again from the same sources as before: “In summary, [SW] is on record as affirming that ME is a “myth” and a “non-existent disease”: between February and April 2002 the BMJ ran a poll of “non-diseases” with which [SW] is widely known to have been involved and to have proposed ME as a “non-disease”..

I had nothing to do with the poll or choice of subject, nor did I suggest ME or CFS as a non disease. I wrote a letter in response arguing the opposite, this is its conclusion:
“But more commonly the act of giving a name to symptoms and disability brings relief. The acknowledgement by the medical profession that a patient’s condition has a name and is a legitimate illness is immensely reassuring and enabling. It also ends the battle of diagnosis—“If you have to prove you are ill you can’t get well.”. Giving a condition a name is an intervention in itself with costs and benefits. Crudely handled, medicalisation can perpetuate disability and exclusion. But used constructively and appropriately it is the first step towards recovery” BMJ EXTRACT
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I had a look at the poll: https://www.bmj.com/content/suppl/2002/04/18/324.7334.DC1 Yuck!

But also in the extract he quotes, he does explain why he thinks CFS is an illness and not a disease. Is that the opposite of a non-disease?

[eta: This has been dealt with elsewhere before (added for completeness). The source he mentioned was possibly the 25% ME Group - although the page no longer exists]
 
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What I find most troubling about SW's purported rebuttal of "Myths" as mentioned in his website linked above is his reference to his letter to the DWP in 1992. This letter shows him in a perfectly reasonable light. The difficulty is that there is a later, undated, letter, marked received 6 October 1993, which does not.

Had he reported this accurately it would have been much easier to give him the benefit of the doubt.
 
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strategist said:
If he was honest, he would explain for example why he thinks that PACE trial adequately controlled for placebo effects.
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Actually he already addressed that. Someone asked him the question on twitter and his reply was roughly (blocked, can't search for it): "the placebo is one of the most powerful interventions we have".

Don't need to account for placebo when placebo is the treatment. Of course the placebo effect is the same as the PACE effect: a questionnaire distortion, but that's another topic.
 
Well, this isn't a good look for expertise when the one-sided narrative of a very controversial charlatan who made many similar controversial claims is taken as fact. Wessely isn't an expert on ME, or CFS, so this defense is remarkable in its lack of self-reflection and skepticism. This is precisely the main point of why he receives so much criticism: he doesn't actually understand this disease at all and has impaired the work of experts for decades.

Especially given this:
When he began working on chronic fatigue syndrome (CFS) in the late 1980s, he felt that patients were getting a raw deal. If they were believed at all
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This is still the case. In fact, things are even worse today than it was back then. Mostly because of his and his like-minded peers' abysmal work and sabotage. This is beyond giving someone a participation trophy, he is one of the main people responsible for the disastrous few decades and being applauded for what amounts to one of the biggest failures in the history of medicine. His entire work on ME is in direct contradiction with what the actual competent experts are working on, it depends on dismissing actual expertise and he is in fact an anti-expert on this topic.

Might as well present Andrew Wakefield as an expert in vaccine safety. There is almost no connection between his reputation and his actual accomplishments. One skill you can certainly recognize in him is his ability to persuade other physicians of his non-existent accomplishments. Just as he persuaded people listening to him here that he believes he should have engaged more with ME patients. He does not in fact believe that and has no intention of ever doing that, he could do it any day, but he sure can persuade people of it.

It takes one hell of a salesman to succeed at selling billions worth of empty snake oil bottles. But that isn't standing up for expertise, it's very much the exact opposite of that. It really takes the post-truth era to see this level of disconnection from reality invading and corrupting medicine.
 
In so far as patients were receiving a raw deal in the late 1980's it was largely from those who believed in the McEvedy and Beard theory of hysteria or conversion disorder as the cause of Royal Free Disease. There was a highly persuasive rebuttal of their arguments in 1990 by Rachel Jenkins. It must be considered unfortunate that in his 1997 book co-authored with Sharpe and Hotopf, SW misquoted Jenkins and mischaracterised her conclusions.
 
The 1980s saw ME begin to be taken seriously as an organic disease There was a lot of research being done that would have borne fruit if he had kept his mitts off it.

Note the sly dig of patients being offered "rest". He kept insisting that complete bedrest was not good for patients and he was against that. At the time we were bewildered because no one was saying bedrest was the answer. Even then it was known that pacing was the best strategy. One group of experts said to to on a good day 75% of what you could do on a bad day so there was energy left over for healing. Not the complete bed rest he "saved" us from.

I can't remember the details of the Ean Proctor case, it was before it was easy to find out things. What I do remember was that SW was interviewed by channel 4 where he said he was not the one who signed the order or something like that but that it was a lie (or a quibble that gave the opposite impression from the truth)

Ean Proctor was dragged from his father's arms by a morning police raid. His father was later interviewed by police as he helped another family with an ME child get the child out of the country when an order was given for that child to be held involuntarily.

Ean was thrown in the pool because they thought he was refusing to move and they thought it would show he could in an emergency, they also took him to a carnival and put him on a ghost train. The whole thing was a sorry mess but I am sure it was true though it could be argued that SW was only the initial instigator and had little further involvement.
 
Philipp said:
I think it is actually pretty interesting how hard it still is to take apart his writings in a meaningful way because he - as far as I know at least - always lies openly about what he actually does by saying things that would be completely reasonably if it wasn't him saying them.
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His papers are vague with jumps in reasoning and language that can be reinterpreted. But that is what should be taken apart in his work as in science there is no place for such practice.
 
rvallee said:
Don't need to account for placebo when placebo is the treatment. Of course the placebo effect is the same as the PACE effect: a questionnaire distortion, but that's another topic.
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This is one of the key aspects of PACE. The apparently positive effects in subjective outcomes are primarily due to the treatments themselves reinforcing the belief they are beneficial. That is a major component of the treatment.
 
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