Discussion in 'General ME/CFS News' started by Sly Saint, Jan 16, 2020.
Reinforcement of narratives is everywhere, expect peaks prior to conferences and pre NICE key milestones ( is there one coming up?)
could this be seen as timely given the Danish ME debacle at the moment, I wonder...
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.
That bit isn't true.
Who was responsible ?
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.
I found this article on the Proctor case which seems to have been written with input from the Proctor family. None of the internal links that I tried actually worked, which is a shame :
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.
What I meant was that it is true that this story about him was circulating. I should've made that way more clear, sorry! Tried to edit the initial post a bit for sake of clarity, hope it makes more sense now.
Page on http://www.simonwessely.com
No specific slides mentioned.
He also choses his words very very carefully:
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]
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.
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:
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.
Kings’ provision of lawyers “when he needed them” is concerning - why would he have needed them? If it was for his involvement in legal disputes about injury and/or disability then it’s not really about science anymore, is it?
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.
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.
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.
Separate names with a comma.