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Who is Simon Wessely?
@Sly Saint I also love the cartoon of him as the mad professor you found in previous years.
I don't have the reference to hand, but IIRC some years back he was the subject of one of those puff pieces in a medical journal about 'why I chose X' where he said he went into psychiatry because didn't like dealing with the body (or words to that effect).
Which is interesting. Suggests he does not like confronting weakness and mortality, so he hides from it by psycho-babbling his way through it.
Or they often die by their own hand, which just 'proves' they were mentally ill.
Andy
Retired committee member
Uh oh @Trish , you're in trouble for having an opinion...
And, if I'm understanding correctly, they are trying to warn me, a co-founder and committee member of the forum, of the evils of this forum by tagging the forum Twitter account....
"CFS/ME Research", thank you for your concern, but I, and the people who I work with on the DecodeME project (which is where I'm assuming you have discovered my name), are well aware of what the forum is like - Prof Chris Ponting is a member here, we have conducted a Q&A with him, and the UK ME/CFS Biobank (CureME) team also are a member here, and we have held two Q&A sessions with them, Q&A 1 and Q&A 2. So I'm not sure they would agree, and I definitely would disagree, that the forum should be avoided.
And, if I'm understanding correctly, they are trying to warn me, a co-founder and committee member of the forum, of the evils of this forum by tagging the forum Twitter account....
"CFS/ME Research", thank you for your concern, but I, and the people who I work with on the DecodeME project (which is where I'm assuming you have discovered my name), are well aware of what the forum is like - Prof Chris Ponting is a member here, we have conducted a Q&A with him, and the UK ME/CFS Biobank (CureME) team also are a member here, and we have held two Q&A sessions with them, Q&A 1 and Q&A 2. So I'm not sure they would agree, and I definitely would disagree, that the forum should be avoided.
Thank you @Hilda Bastian for your replies on the tweet thread.
ladycatlover
Senior Member (Voting Rights)
Went to look, found I'd blocked them! Had a brief look (you can see without unblocking, which I didn't know before) and remember why I blocked them!
Well, I'm sorry, "CFS/ME Research" (I note you hide behind an anonymous identity on Twitter, so we have no idea who you are and what your role is in the world of ME research) I stand by my comment.
It was, of course, rather baldly stated, but I can't see anything I said that isn't based in publicly available facts.
Fact - Wessely has stated his opinions about what ME/CFS is 30 years ago and not changed his view one iota in the face of evidence, particularly going on defending the indefensible PACE trial.
Fact - he takes every opportunity he can to denigrate all ME sufferers on the basis largely that we dare to challenge his and his colleagues shoddy research.
Fact - he has talked about his career and his decision to study medicine in the sort of terms I describe,
Fact - he has gathered awards, titles, positions of influence - you have to set out deliberately to get to the positions he has reached, they don't just happen.
Fact - his theories about ME have led to 30 years of shoddy research trying to prop them up and promote ineffective and harmful treatments.
Fact - he works in the same university as, and has presumbably had some influence over, the prominent careers of Chalder and Moss Morris.
Fact - Chalder and Moss Morris continue to publish appallingly scientifically illiterate research papers on the use of CBT for ME, IBS, dissociative seizures and other conditions whose aetiology is yet to be fully determined. The ability to maintain that level of shoddy work, and publish scientifically incoherent papers, leads to a logical conclusion that they are not the brightest sparks.
(see David Tuller's latest articles and letters to researchers)
Fact - many people with ME, whose symptoms are largely hidden from observers, and who have been ignored and dismissed for decades as 'heartsink' patients, are grateful for anyone who listens and offers hope - that makes us easy patients for those who want to boost their egos with grateful patients who compliantly fill in questionnaires saying they have helped.
Fact - Chalder has one of the worst questionnaires ever invented carrying her name. Even the scoring system makes no sense. It is either deliberately designed to confuse so they can get the results they want, which I admit, would require some level of intelligence to pull off, or is an indicator of stupidity. Take your pick.
Fact - Wessely still makes pronouncements about ME and derogatory comments about ME patients, at the same time as saying he has left the field. He even got himself awarded a prize (the Maddox prize) on the claim that he had stuck with ME research in brave defence of good science (!) in the face of attack.
Fact - he publicly distances himself from shoddy research he was involved in - he was heavily involved in PACE as a centre leader and advisor, but distances himself from it by not being listed on the published paper, leaving others to take the flak when the shit hit the fan and the conclusions the authors tried to draw from it were proven to be the result of multiple unscientific practices.
So "CFS/ME Research", I'll take no lessons from you. And yes, I have responsibility as a staff member of this forum to behave reasonably so as not to bring the forum and its members into disrepute, but I can't see anything I said that was not based in fact.
The tone of my post was, I agree, rather blunt, but perhaps you can, if you have any humanity, understand that the harm Wessely, Chalder, Moss-Morris and their ilk have done to me directly is on a far greater scale of harm than any harm few rather blunt words from me about them on social media.
They have got stellar careers on the back of increasing the suffering of thousands. I lie in bed most of every day feeling very ill, with my daughter lying in the bedroom across the hallway from me the same, her life ruined before it even got started by this damned illness.
So forgive me if I am a little bit angry with the named individuals for putting us in a position where the only medical 'care' we get is GP's telling us to exercise, and offering us antidepressants, both now known to be either useless or harmful for us.
"CFS/ME Research", I assume you are reading this, since you copied my previous post to Twitter without doing me the courtesy of asking my permission. Yes, I know you are free to do so, but it is considered courteous to ask permission first.
I give you permission to copy my response to twitter too.
And it's really not good enough to assume we don't read the studies we discuss. If I've only read the abstract, I say so. (That's Sharpe's fallback position. He can't defend his work, so he falls back on suggesting detractors of his work don't read it properly. Pathetic. He never addresses the issue in any meaningful way).
If you are brave enough, why not identify yourself and come and join us here and have a discussion with us 'face to face' about the substance of the research done by these researchers instead of hiding behind a pseudonym on the safety of Twitter where you can attack people with ME, defend shoddy research, and simply block people who dare to challenge your views.
Edited to correct a Twitter pseudonym.
It was, of course, rather baldly stated, but I can't see anything I said that isn't based in publicly available facts.
Fact - Wessely has stated his opinions about what ME/CFS is 30 years ago and not changed his view one iota in the face of evidence, particularly going on defending the indefensible PACE trial.
Fact - he takes every opportunity he can to denigrate all ME sufferers on the basis largely that we dare to challenge his and his colleagues shoddy research.
Fact - he has talked about his career and his decision to study medicine in the sort of terms I describe,
Fact - he has gathered awards, titles, positions of influence - you have to set out deliberately to get to the positions he has reached, they don't just happen.
Fact - his theories about ME have led to 30 years of shoddy research trying to prop them up and promote ineffective and harmful treatments.
Fact - he works in the same university as, and has presumbably had some influence over, the prominent careers of Chalder and Moss Morris.
Fact - Chalder and Moss Morris continue to publish appallingly scientifically illiterate research papers on the use of CBT for ME, IBS, dissociative seizures and other conditions whose aetiology is yet to be fully determined. The ability to maintain that level of shoddy work, and publish scientifically incoherent papers, leads to a logical conclusion that they are not the brightest sparks.
(see David Tuller's latest articles and letters to researchers)
Fact - many people with ME, whose symptoms are largely hidden from observers, and who have been ignored and dismissed for decades as 'heartsink' patients, are grateful for anyone who listens and offers hope - that makes us easy patients for those who want to boost their egos with grateful patients who compliantly fill in questionnaires saying they have helped.
Fact - Chalder has one of the worst questionnaires ever invented carrying her name. Even the scoring system makes no sense. It is either deliberately designed to confuse so they can get the results they want, which I admit, would require some level of intelligence to pull off, or is an indicator of stupidity. Take your pick.
Fact - Wessely still makes pronouncements about ME and derogatory comments about ME patients, at the same time as saying he has left the field. He even got himself awarded a prize (the Maddox prize) on the claim that he had stuck with ME research in brave defence of good science (!) in the face of attack.
Fact - he publicly distances himself from shoddy research he was involved in - he was heavily involved in PACE as a centre leader and advisor, but distances himself from it by not being listed on the published paper, leaving others to take the flak when the shit hit the fan and the conclusions the authors tried to draw from it were proven to be the result of multiple unscientific practices.
So "CFS/ME Research", I'll take no lessons from you. And yes, I have responsibility as a staff member of this forum to behave reasonably so as not to bring the forum and its members into disrepute, but I can't see anything I said that was not based in fact.
The tone of my post was, I agree, rather blunt, but perhaps you can, if you have any humanity, understand that the harm Wessely, Chalder, Moss-Morris and their ilk have done to me directly is on a far greater scale of harm than any harm few rather blunt words from me about them on social media.
They have got stellar careers on the back of increasing the suffering of thousands. I lie in bed most of every day feeling very ill, with my daughter lying in the bedroom across the hallway from me the same, her life ruined before it even got started by this damned illness.
So forgive me if I am a little bit angry with the named individuals for putting us in a position where the only medical 'care' we get is GP's telling us to exercise, and offering us antidepressants, both now known to be either useless or harmful for us.
"CFS/ME Research", I assume you are reading this, since you copied my previous post to Twitter without doing me the courtesy of asking my permission. Yes, I know you are free to do so, but it is considered courteous to ask permission first.
I give you permission to copy my response to twitter too.
And it's really not good enough to assume we don't read the studies we discuss. If I've only read the abstract, I say so. (That's Sharpe's fallback position. He can't defend his work, so he falls back on suggesting detractors of his work don't read it properly. Pathetic. He never addresses the issue in any meaningful way).
If you are brave enough, why not identify yourself and come and join us here and have a discussion with us 'face to face' about the substance of the research done by these researchers instead of hiding behind a pseudonym on the safety of Twitter where you can attack people with ME, defend shoddy research, and simply block people who dare to challenge your views.
Edited to correct a Twitter pseudonym.
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I think this actually makes for an interesting talking point that is a bit... well, meta on where and when opinions and the way different people value the same situation become invalid.
Those BPSers are usually very good at being right at the edge of what is easily tractable on a factual basis and where it is impossible to talk about something without injecting a valuation. A lot of what they do are blatant smear campaigns that are ad hominem against a faceless patient population where the framing lies in the precise choice of research subject and wording of findings.
Apparently, it is not as fun when we turn the tables and decide what we think is worth talking about - to me, given the context of the entire situation, the post by Trish in question is not so much an ad hominem and more a valid writeup of how things have transpired. I cannot find anything there that is flat out untrue or wrong. A moderator of this here forum calling out people in eminent positions who abuse and grossly misuse their power against vulnerable populations by accurately describing what they do isn't 'posting personal attacks on scientists they don't like', it is... I guess civic duty? Attributing personal gain as a goal as well as the 'idiots' part may be wrong because it is possible they are all fully aware of what they are doing and happen to be just extremely evil, of course, so still giving them the benefit of the doubt is actually the nice way to interpret everything.
At the heart of our collective criticism of the bad research with a psychological slant is that there is little gain in knowledge by doing them, reading them takes up a considerable amount of time and those who do find them to be of value usually fall into the trap of thinking that ineffective work repeated ad nauseam still builds a base of hints which leads to a body of knowledge. This is sort of tautological as research that actually answers questions that enables us to take productive actions isn't bad and everything I just mentioned applies to research regarding t-cells and viruses and blood flow and metabolic stuff as well. There is a difference in what a layperson without specialized knowledge can look through between the two camps, but even I can tell that a trial that is lowering its own recovery threshold below the point of recruitment and obfuscating everything as hard as possible to the point where even the very (re-)definition of the word recovery is needed to pull the cart out of the mud is not terribly helpful.
It is a bad faith argument that heavily politicised discussions should not be had when discussing science due to their political nature when one is faced with political attacks on science that are thinly veiled as legitimate fact-based standpoints, e.g. claims on how to handle large virus outbreaks by not testing for antibodies as much to reduce apparent case numbers is something that scientists very much do have to talk about.
In this same vein we do have to talk about how framing people like the dude this thread is about as being 'researchers' is essentially a bad faith argument - self-identifying as a scientist does not turn you into one. You have to do actual science. It is completely possible to do good science on aspects of a topic that are not very interesting to many people or end up going nowhere eventually and that is fine. What is not fine is churning out pseudoresearch and then starting to whine about how it is not okay to be called bad at your job because you really, really, really want to self identify as a real scientist.
Now, I very much do remember Wessely claiming that he understands how trials ought to be designed because he himself wrote a book about said subject when asked why a virtually uninterpretable trial was so great. I remember Sharpe not answering any real question ever and only tackling things on which he can put his very weird spin. I remember Chalder putting her name on a multitude of questionnaire pseudostudies that were either a waste of time or a questionable conformation of what is common sense to people with the slightest bit of empathy which will always look like wasting time and money in a field that is strapped for resources.
We do not dislike them because we 'don't like their research' on the basis of what it shows, we dislike that it usually doesn't show anything. We dislike what this group of non-scientists do because of how they handle themselves professionally in the sense that they do not seem to want to understand where their work is badly executed, badly set up, inconsequential etc. We almost never get any productive answers to any legitimate questions we may have.
So I would conclude our overall dislike is well-founded and exists for very legitimate reasons.
But again, none of all that is taken into consideration when some weird account that randomly scrambles ME/CFS around just to be edgy or whatever instead of taking part in any productive discussion rises from the depth of the internet to have their shot at a little bad-faith oversimplification.
Those BPSers are usually very good at being right at the edge of what is easily tractable on a factual basis and where it is impossible to talk about something without injecting a valuation. A lot of what they do are blatant smear campaigns that are ad hominem against a faceless patient population where the framing lies in the precise choice of research subject and wording of findings.
Apparently, it is not as fun when we turn the tables and decide what we think is worth talking about - to me, given the context of the entire situation, the post by Trish in question is not so much an ad hominem and more a valid writeup of how things have transpired. I cannot find anything there that is flat out untrue or wrong. A moderator of this here forum calling out people in eminent positions who abuse and grossly misuse their power against vulnerable populations by accurately describing what they do isn't 'posting personal attacks on scientists they don't like', it is... I guess civic duty? Attributing personal gain as a goal as well as the 'idiots' part may be wrong because it is possible they are all fully aware of what they are doing and happen to be just extremely evil, of course, so still giving them the benefit of the doubt is actually the nice way to interpret everything.
At the heart of our collective criticism of the bad research with a psychological slant is that there is little gain in knowledge by doing them, reading them takes up a considerable amount of time and those who do find them to be of value usually fall into the trap of thinking that ineffective work repeated ad nauseam still builds a base of hints which leads to a body of knowledge. This is sort of tautological as research that actually answers questions that enables us to take productive actions isn't bad and everything I just mentioned applies to research regarding t-cells and viruses and blood flow and metabolic stuff as well. There is a difference in what a layperson without specialized knowledge can look through between the two camps, but even I can tell that a trial that is lowering its own recovery threshold below the point of recruitment and obfuscating everything as hard as possible to the point where even the very (re-)definition of the word recovery is needed to pull the cart out of the mud is not terribly helpful.
It is a bad faith argument that heavily politicised discussions should not be had when discussing science due to their political nature when one is faced with political attacks on science that are thinly veiled as legitimate fact-based standpoints, e.g. claims on how to handle large virus outbreaks by not testing for antibodies as much to reduce apparent case numbers is something that scientists very much do have to talk about.
In this same vein we do have to talk about how framing people like the dude this thread is about as being 'researchers' is essentially a bad faith argument - self-identifying as a scientist does not turn you into one. You have to do actual science. It is completely possible to do good science on aspects of a topic that are not very interesting to many people or end up going nowhere eventually and that is fine. What is not fine is churning out pseudoresearch and then starting to whine about how it is not okay to be called bad at your job because you really, really, really want to self identify as a real scientist.
Now, I very much do remember Wessely claiming that he understands how trials ought to be designed because he himself wrote a book about said subject when asked why a virtually uninterpretable trial was so great. I remember Sharpe not answering any real question ever and only tackling things on which he can put his very weird spin. I remember Chalder putting her name on a multitude of questionnaire pseudostudies that were either a waste of time or a questionable conformation of what is common sense to people with the slightest bit of empathy which will always look like wasting time and money in a field that is strapped for resources.
We do not dislike them because we 'don't like their research' on the basis of what it shows, we dislike that it usually doesn't show anything. We dislike what this group of non-scientists do because of how they handle themselves professionally in the sense that they do not seem to want to understand where their work is badly executed, badly set up, inconsequential etc. We almost never get any productive answers to any legitimate questions we may have.
So I would conclude our overall dislike is well-founded and exists for very legitimate reasons.
But again, none of all that is taken into consideration when some weird account that randomly scrambles ME/CFS around just to be edgy or whatever instead of taking part in any productive discussion rises from the depth of the internet to have their shot at a little bad-faith oversimplification.
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Hoopoe
Senior Member (Voting Rights)
He is that patient, I forgot his name, who published an article on a website somewhere (not in a real journal) and now styles himself researcher. He thinks CFS is burnout because avoiding stress helped him recover.
To me this is just like every other patient with a pet theory who thinks they solved CFS, unaware of the complexity of reality.
To me this is just like every other patient with a pet theory who thinks they solved CFS, unaware of the complexity of reality.
Sly Saint
Senior Member (Voting Rights)
cfs_research is one of the two regulars who jump in to defend MS
see
https://www.s4me.info/threads/my-co...th-cfs-research-and-prof-michael-sharpe.4570/
May I be the first to congratulate them on being a perfect match.
Jonathan Edwards
Senior Member (Voting Rights)
I love the idea of Andy needing to be careful about posting on S4ME. Seriously, @Andy, now that you are an academic gearing up to publish major papers on ME, you may have to think about being 'loyal' to your colleagues as Michael Sharpe told me off for not being. You may no longer be able to be just a PWME, you may have to become a 'valid scientific construct'. Life may get tough. But you can look forward to retirement when you can say anything you darn well please - as long as you are not angling for a knighthood that is. 
Darn it, there goes my damery (or is it damehood?).
Snow Leopard
Senior Member (Voting Rights)
It was the puppy-eyes that got you, wasn't it!?!
Esther12
Senior Member (Voting Rights)
Those were a poor ways to start the list imo. eg: Wessely's said he used to view CFS as closer to depression than he does now, and the second one is more hyperbole than fact too. Every opportunity to denigrate all ME sufferers?
There's not a lot of worthwhile facts around CFS research.
Sly Saint
Senior Member (Voting Rights)
it's on this thread
https://www.s4me.info/threads/simon-wessely-research-related-quotes.1304/
maybe cfs_research (or those who have come to this thread thanks to their 'recommendation') might like to read a few of these quotes to familiarise themselves with SW's 'research' (although SW would argue that he has already dispelled all 'myths' on his personal blog site).
Fair enough. I admit I wasn't trying to cover every aspect of Wessely's view of ME, I was focusing on his current view which as far as I can see has been the same for decades.
On the second point, I can only speak on what I have witnessed, and whenever I've seen/heard him talking about ME he has made a point of talking about harassment.
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