Simon Wessely wins prize for "Standing Up For Science."

[beaverfury]

BBC radio interview on Wesseley vilification 2011
http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm.

Oh,good grief. The blunders he makes in the media. When the interviewer loses any objectivity at 4.02m Wesseley misses any opportunity he has to clarify matters and goes on with the media moment.
Its hard not to get antsy about stuff like this. His beliefs are transparent, yet he seems to want to run with the hares, hunt with the hounds.

RE; above
“The absence of abnormnal tests leads to the erroneous conclusion that nothing is wrong, or alternatively to the understandable but misguided tendency to over interpret minor abnormalities or variants. The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: “the average doctors will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible” (Alvarez, 1935). Thus, attitudes towards psychiatric illness affect both patient and doctor with equally adverse effects on prognosis”. Wesseley. (My bold)

"The absence of abnormnal tests leads to the erroneous conclusion that nothing is wrong, or alternatively to the understandable but misguided tendency to over interpret minor abnormalities or variants".

Simon wouldnt make this mistake, if he was on duty!

No middle ground then, between these two extremes?.. Minor abnormalities or variants must be associated with misguided tendency to overinterperet. What about the occasions when testing finds biological dysfunction which leads to treatment??
The nice little narrative gap between these two polarities is where Wesseley can weave his magic.

"Thus, attitudes towards psychiatric illness affect both patient and doctor with equally adverse effects on prognosis”.

Psychiatric illness?? What psychiatric illness? Who mentioned anything about a psychiatric illness??
Suitably ambiguous for Wesseley. Whose attitudes? The Treating doctor's attitudes? The patients attitudes?

I get thoroughly annoyed at this sort of shape shifting talk which allows him to get away with saying anything, because, in retrospect he's said nothing definite at all. Its elusive, and allows him to cover his tracks later.
Maybe it is just me, but the more i read his sentences the more they dissolve into vapour.

All i would really like is for him definitively to say, we've learnt a lot since the 90's and in retrospect a lot of our assumptions have to be revised.
But, no!
He stands firm, while shuffling sideways.

 

[Bob]

I get thoroughly annoyed at this sort of shape shifting talk which allows him to get away with saying anything, because, in retrospect he's said nothing definite at all. Its elusive, and allows him to cover his tracks later.
Maybe it is just me, but the more i read his sentences the more they dissolve into vapour.

Yes, that's exactly the same feeling I had, when reading his CFS review paper that I posted about earlier.
Much of it is ambiguous, undefined, slippery, vaporous.
But then he suddenly says just the odd thing that hits you in the face.
(e.g. CFS equates to anxiety.)

 

[beaverfury]

Urk! Just going over collected Wesseley quotes from,
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

I can't vouch for the contexts, or quotes for that matter. I've only read a few abstracts of his articles.

I guess this is the sort of quoting that concerns him. A reader would have use his own critical faculties to draw conclusions from the original text.
Nonetheless, the sheer number of quotes in the same vein presents a very clear ideology. Not pretty.
Read it for yourself and see what you think.

 

[Enid]

He does seem terribly confused but then so much of psychiatry is (theories and guesswork). But one thing is for sure he needs the limelight and feels his constant pronouncements should carry us all along as some font of knowledge. Actually it seems to me he simply trying to sort out his own problems with the very basis (and limitations) of psychiatry in the whole world of medicine, and make it appear as important as say the complexities of virology or neurology (the real sciences). His real "agenda" is not ME but the need to justify himself.

In short he is a very confused man.

 

[Dx Revision Watch]

Re Co-Cure:

On a general note, postings that are mailed out to those registered to receive Co-Cure mailings via the Co-Cure Listserv are archived, publicly, at:

https://listserv.nodak.edu/archives/co-cure.html

Co-Cure mailings are therefore in the public domain but Co-Cure mailings do not appear in Google or other search engine listings.

Suzy Chapman

 

[Merry]

Re Co-Cure:

On a general note, postings that are mailed out to those registered to receive Co-Cure mailings via the Co-Cure Listserv are archived, publicly, at:

https://listserv.nodak.edu/archives/co-cure.html

Co-Cure mailings are therefore in the public domain but Co-Cure mailings do not appear in Google or other search engine listings.

Suzy Chapman

As always, much obliged, Suzy.

 

[Esther12]

Sorry if I'm missing stuff - thread's moving quickly, and I'm distracted by other stuff.

Urk! Just going over collected Wesseley quotes from,
http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

I can't vouch for the contexts, or quotes for that matter. I've only read a few abstracts of his articles.

I guess this is the sort of quoting that concerns him. A reader would have use his own critical faculties to draw conclusions from the original text.
Nonetheless, the sheer number of quotes in the same vein presents a very clear ideology. Not pretty.
Read it for yourself and see what you think.

I searched for 'disgust', and the old quote popped up out of context. I think that those sorts of documents are unhelpful, and I'd advise people to stay away from those sorts of things. I find that I almost always need to quote the full paragraph for psychosocial CFS stuff, and even then I'm sure that they could sometimes fairly complain I was misrepresenting them.

A bit OT, but there's a discussion of Tate Mitchell's quotable quotes here: http://forums.phoenixrising.me/inde...bt-in-me-cfs-compiled-by-tate-mitchell.15184/

I posted in it, but can barely remember it now. It looks like Tate has quoted full paragraphs and he's linked to a lot of the primary sources, he's also done some other good CFS work. That looks like a much better way of collating illustrative examples of the psychosocial approach to CFS (I've been trying to learn from some of the things I like about how Tate presents things). With documents on the internet, we really should take advantage of linking to give people an easy way to check context (lack of open access often makes this a pain).

 

[Esther12]

I managed to get access to just a very short section of the book that it was published in:
http://www.amazon.co.uk/Somatoform-Disorders-Experience-Psychiatry-ebook/dp/B000QCS6FS

You can search the book for specific bits you are interested in. I was able to find context for bit that had been quoted, eg: I searched for

The patient is encouraged to think of the illness as "real but reversible by his or her own efforts" rather than (as many patients do) as a fixed unalterable disease.

I hate that sort of pragmatism.. context makes it worse imo:

Most patients respond to some degree to rehabilitative therapies, but many will only achieve partial improvement and some will fail to improve at all

(I've got to hand-type it, so I'm not doing it all! Look though... those quotes are out of context!)

I can't f-ing believe that I was encouraged to believe my health problems were reversible by my own efforts, not because the evidence had shown this to be true, but because they thought everyone fulfilling the criteria for CFS deserved to be psychosocially managed. It's just disgusting. Even after having seen how quaky these claims were, I still find it really emotionally difficult to let go of the belief that I'm likely and able to recover (and soon!), particularly with a lack of apology or accountability for the quackery that was inflicted on me and so many others. And even ignoring the impact it had on me personally, promoting these exaggerated notions of recovery have such a profound impact on how society treats and views those with CFS.

Now seems a good point to link to the recent thread on the PACE researchers attempt to avoid releasing their data in the manner laid out in their protocol:

http://forums.phoenixrising.me/inde...d-releasing-data-on-recovery-from-pace.20243/

 

[Firestormm]

I don't recommend pursuing any demand for proof or evidence of the harassment, death-threats or otherwise. It would prove counter-productive and damaging. Said it before. Have said it again.

Wessely has not been silent about his award and has been engaging with his critics. Here his replies (have bolded those relating to publishing names etc. of those harassing him):

All comments appear on the following blog: http://noodlemaz.wordpress.com/2012/11/07/john-maddox-prize-2012/

Firestormm has included additional spacing to help him read this all again in the morning when he hopes to be more compus mentus ​

I missed one. Sorry.

simon wessely Says:
November 9, 2012 at 17:23

OK, caught out. I thought I had logged out of the blog, but still seem to be getting updates via e mail! I simply couldn’t resist replying to this.

1. In 1987 I was working at the National Hospital for Neurology in Queen Square, I wasn’t working In Glasgow. So I was describing the reactions of the neurologists, of whom there were dozens, around me. I certainly knew that Peter Behan had a different view, but as I am sure he would agree, he was in a minority of neurologists then and still is now.

2. You ask if it is true that I endorsed Elaine Showalter’s book “Hystories”/ Why did you think that I did? Not long after she published that, I was fortunate enough to meet her socially, and we have remained friends ever since. But did I endorse it? No. I didn’t agree with it. So why didn’t I make that public. Actually I did. http://www.simonwessely.com/Downloads/BookChapters/CFS_Trueillness.doc

I don’t blame you for not knowing this, not many people would take the trouble to track down a chapter in a book published by the Royal College of Physicians. But there are one or two people who have done just that, just as they track every single thing that I have ever written on anything, trying to worm out of it anything that can be in the slightest discredible to me, and if they fail to find anything, they simply distort, misquote or on occasions simply invent it.

It is far easier to spread the view that I agree with Elaine on CFS than actually report the fact I debated in public with her at the Royal College, that I disagreed with her, and that we both published our dissenting views afterwards. And yes, we are still friends.

It is after enduring twenty years of this that I decided to set up the website and put as much as possible of everything that I have published, not just in journals but in the media, on the website.

Indeed, if any of you have access to anything at all that I have written and isn’t there (I am afraid I am not the best archivist) please send it to me, and I will add it as well.

The only things missing are things that I can;t find anymore. Go on, take the trouble to read what I have actually written, and see then if I am the person that you think I am, or have the views that others have told you that I have. And also just think for a moment who is it that is misleading you, cos I am afraid it ain’t me.

Now, this time I am going to find the unsubscribe button. Apologies for that, but I really have to return to the day job. Incidentally, far from retreating into the lager and hiding away from dissent and alternative views, I have spent a long time doing the opposite, provided that it is expressed courteously, as it usually is.

I have a feeling that might have been why I was awarded the prize earlier this week – but I don;t know, because in answer to an earlier post, no, I wasn’t on the committee!

All the best, and speaking personally, I am sorry to hear that you remain unwell, and hope things improve even after all these years. I can speak from clinical experience and say that it does sometimes happen, even if we don’t always know why.

SW

Ooopsss and another. Reply to Mary Schweitzer if I am not totally confused:

simon wessely Says:
November 11, 2012 at 13:18

I was intending to rejoin the discussion after the weekend, so long as things remained courteous. Sadly not to be.

When some one writes “Wessely came and he lied. He does not use the Fukuda (1994) definition. He is a co-author of a competing definition called Oxford” what is the point in continuing?

1. To accuse someone of lying in a scientific paper (and in fact it is not one, but probably a hundred) is a very serious allegation to make indeed. And it is not just an accusation leveled at me, but at all my .colleagues and co authors over the years on those CFS papers, probably several dozen at least.

2. The Oxford criteria were published in 1991. By the way the authors came from across the spectrum of those working on CFS back then – only a minority were psychiatrists. Peter Behan, the neurologist mentioned earlier, was one. They were an improvement on the previous 1988 criteria

3. When the Fukuda criteria were published in 1994, these soon became adopted almost universally, and we also started using them. We even published a paper in 1997 describing our semi standardised assessment procedures. For years now every single assessment in the clinic uses the same check list, which generates the Fukuda criteria. The only exception was when the clinic was recruiting for the PACE trial, which did use the Oxford criteria, but still collected data enabling stratification by other criteria as well (which by the way made no difference to the published outcomes) including Fukuda.

4. It is also a pointless allegation. The Erlwein et al PLOS One paper, which is the paper from which I cut and paste, and was the first of many to fail to find the presence of XMRV in CFS, would have been been negative whatever criteria had been used. .

There is simply no point in carrying on if the reaction to the statement that a particular paper of ours uses a particular criteria, and which is itself part of the scientific record and can anyway be easily verified by checking with the rest of our work, is to accuse me of lying. To disagree with the criteria is one thing, but to say that we don’t use them when we do is quite another.

 

[Dx Revision Watch]

http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

QUOTABLE QUOTES ABOUT ME/CFS.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome​

also known as PVFS (Post-Viral Fatigue Syndrome)​

sometimes known as CFIDS​

(Chronic Fatigue & Immune Dysfunction Syndrome) in the USA​

Compiled by Margaret Williams on behalf of the charity Invest in ME. Registered Charity

April 2007

 

[Firestormm]

http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

QUOTABLE QUOTES ABOUT ME/CFS.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome​

also known as PVFS (Post-Viral Fatigue Syndrome)​

sometimes known as CFIDS​

(Chronic Fatigue & Immune Dysfunction Syndrome) in the USA​

Compiled by Margaret Williams on behalf of the charity Invest in ME. Registered Charity

April 2007

Well, Suzy, given what has all ready been pointed out by Wessely on that blog, I sure hope these 'Quotable Quotes' are verifiable and correct. I think this has been posted on that blog as well. There was something from ME Action UK on there that I recall.

 

[Esther12]

http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

QUOTABLE QUOTES ABOUT ME/CFS.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome​

also known as PVFS (Post-Viral Fatigue Syndrome)​

sometimes known as CFIDS​

(Chronic Fatigue & Immune Dysfunction Syndrome) in the USA​

Compiled by Margaret Williams on behalf of the charity Invest in ME. Registered Charity

April 2007

That included the 'disgusted' quote out of context too Suzy. If there are quotes misrepresented, then it's likely to mislead people.

I missed one. Sorry.

Ooopsss and another. Reply to Mary Schweitzer if I am not totally confused:

It would have been fantastic to watch Wessely talk about PACE's claims about 'back to normal' and recovery.

Almost anyone new to CFS who read that discussion would be on Wessely's side though.

Someone said that he should provide context to a list of quotes on this forum, which already had comments underneath saying that the quotes were misleading!

 

[Enid]

Firestormm - re your interesting post 149 - SW 9/11/2012 @ 17.23 .......working at the NH for Neurology, Queen Square ......describing the reactions of the Neurologists .... Behan in the minority then and still is now.

Well a close member of my own family is a Neurologist (Prof) and he and the two I was sent to a little while ago finding abnormalites in MRI scans (amongst others) would not agree. In fact suggested viral and one actually apologised suggesting I find an ME specialist to whom he would release all his test results. He simply did not understand and admitted it. The close family member developed ME a year after mine and is being treated with a range of drugs (overseas) by his own Docs.

Cheerio Simon and all your claptrap - this isn't 1987 - catch up.

 

[Dx Revision Watch]

Well, Suzy, given what has all ready been pointed out by Wessely on that blog, I sure hope these 'Quotable Quotes' are verifiable and correct. I think this has been posted on that blog as well. There was something from ME Action UK on there that I recall.

I missed that a link for this Margaret William's document has already been posted here (I've had the thread page open, but had not refreshed).

Note that I am not endorsing this document and any concerns about its content should be addressed to its author and publisher. Invest in ME are selling print versions of this document on their website.

The "disgusted" quote also appears in the "Magical Medicine" document.

Suzy Chapman

 

[Bob]

I managed to get access to just a very short section of the book that it was published in:

http://www.amazon.co.uk/Somatoform-Disorders-Experience-Psychiatry-ebook/dp/B000QCS6FS​

​

You can search the book for specific bits you are interested in. I was able to find context for bit that had been quoted, eg: I searched for

The patient is encouraged to think of the illness as "real but reversible by his or her own efforts" rather than (as many patients do) as a fixed unalterable disease.

I hate that sort of pragmatism.. context makes it worse imo:

Most patients respond to some degree to rehabilitative therapies, but many will only achieve partial improvement and some will fail to improve at all

(I've got to hand-type it, so I'm not doing it all! Look though... those quotes are out of context!)

Thanks Esther. Thanks for the tip about searching. That's a handy facility!

So the bits, that you've quoted, state that, on the one hand, patients should be told that their illness is reversible, but on the other hand, they say that many will only achieve partial improvement, and some will fail to improve. So they are misleading, and lying to, some patients. Is that good medicine? I understand your frustration with having been misled, Esther.


I just had another look at the book. It's strange that they do seem to be acknowledging some physiological abnormalities, and biomedical research, but then they keep contradicting themselves. It's very confusing and contradictory. (I'm very confused, reading it, anyway!)

It seems to me that they are constantly attempting to make the facts (the research evidence), fit their model of illness, but it doesn't fit, and so they get themselves into a really inconsistent muddle by taking that approach.

The bottom line, for me, is that they say that it is not possible to distinguish CFS from an anxiety or a somatoform disorder, as they say that they all have identical medical presentations.
This suggests that they are not looking for differences, and that they aren't interested in the differences, and that they aren't interested in researching anything other than idiopathic fatiguing illnesses.

They seem to say that CFS is simply an extension of fatigue in the normal population.

They suggest that a psychiatric diagnosis is unhelpful for patients who are resistant to it (not patronising at all), and also question what the nature of a psychiatric illness is. So they seem to want to keep CFS as a psychiatric illness, but are confused as to whether it is psychological in origin, or whether it is psychological in outcome (e.g. a psychological illness that was triggered by a virus - they acknowledge that there is "much sounder evidence" with regards to EBV being a 'trigger') (page 263), or if it is just perpetuated by psychological factors. (They seem to be the options that they seem set on, but I'm not entirely clear about it.) These models all fits with their assertion/theory that CFS responds to cognitive-behavioural therapies, and I think this (i.e. the promotion of their beloved cognitive/behavioural model) is more important to them than anything else.

 

[Bob]

They do have a very patronising, patriarchal approach to patients:

Tell the poor dears not to worry, and that they will get better, if they make an effort to, and if they stop worrying.
(Even though this isn't true.)

Don't tell the poor dears that they have a psychiatric illness, if they don't like that diagnosis, because that will upset them. Tell them whatever they want to hear.
Ironically, they think that they are lying to patients, in this case, but it's the only time they are telling the truth!

They seem to think that we live in the dark ages, when patients had no access to medical information or evidence, and could be patted on the head, told not to worry about their symptoms, and sent away.

 

[Jarod]

I believe healing and treatments are right around the corner. It's just a matter of removing some roadblocks. Problem solved... money would flow to legitimate research.

Bob,

It sounded like you just said they want it both ways. To deny a psychological diagnosis and deny the Biological diagnosis.

 

[notinfinite]

last line of his quote

"And also just think for a moment who is it that is misleading you, cos I am afraid it ain’t me."

If it is not Wessely, then who does Wessely suggest is doing the misleading?

Is he seriously suggesting that the last 20 years of his reign as the god of science where ME/CFS is concerned have been represented by someone other than himself or is he trying to say that the opinions of doctors outside of psychiatry are misleading us, or someone else?

Why is it that any communication from him has double meanings that are so open to mis-interpretation?

Wessely must be aware of the mis treatment of ME/CFS patients, he apparently is aware of the anger, he must be in the loop where scientific research has made gains, he must have access to government to advise them where welfare is concerned that the people making claims need that financial assistance to live, (BN/141 etc) he must be aware of the deaths that have occurred - if he is up to date on events why does he NEVER defend ME/CFS patients - why do his words always come with a negative connotation?

As far as the 'threats' go, even if he has been subject to threats, why is he any different to any other high profile voice? There are 17,000,000+ of us out there, out of any distribution curve involving that amount of people, there will be those that find it difficult to contain their anger - I would bet there are many psychiatrists that receive threats from patients who do not have ME/CFS - why does he not disparage or belittle them - why are we, as a population at the mercy of his subjective opinion? Why is his voice so 'loud'?

Why can we never get our voice heard unless we wait months/years for answers from those that represent us (MP's, Lords) - only to be diverted time and time again?

Why do we get criticized for using the FOI act when this is the only avenue open to us?

Why are the media so negative in their 'message' when ME/CFS is the subject?

Why do Doctors look at me blankly when in answer to their question, "What is the problem, why have you come to see me today" I tell them I have ME/CFS?

Why do they suggest CBT and graded poxy exercise?

Does Wessely deny he inferred the WHO had backed his claim that ME/CFS was reclassified as a mental illness - I don't recall him apologising for that one to patients or the Government/Lords. Or is that a lie too?

I don't respect Wessely, I don't like him, I don't trust him. Too slippery, way too slippery.

 

[Sean]

The important thing to keep in mind when dealing with Wessely, et al, is that they can bog you down with endless, apparently authoritative, but highly selective and misleading arguments about details and the interpretation of them, while completely avoiding confronting the ugly central fact of the big picture, which is that:

Their explanato-therapeutic model has not delivered anything of substance, and is clearly not going to.

Nothing can make that fact, nor its brutal real-world consequences for patients, conveniently go away.

 

[Bob]

It sounded like you just said they want it both ways. To deny a psychological diagnosis and deny the Biological diagnosis.

It's a very very confusing paper. Their theory seems so muddled, and contradictory, that I can't define it. I haven't read it all yet, and I need to read more of their paper, to get my head around it. (Although, I'm not sure if it's worth reading it all.) They often avoid being explicit, and it's nearly all very ambiguous, and vague, and apparently contradictory. I'm not sure if they are denying/promoting a psychological diagnosis or a biological diagnosis. They seem to want something in between, or both at the same time. At one point, they seem to say that 'CFS' is exactly the same as 'anxiety', and that it's the physician's choice to chose the 'medical' diagnosis (CFS) or the 'psychiatric' diagnosis (anxiety), as they have exactly the same symptoms. Then they say it's not desirable to have a double diagnosis of CFS/generalized-anxiety-disorder, so they seem to want a new diagnosis which would incorporate both diagnoses simultaneously. Then they talk about achieving this through the forthcoming DSM-V. It really has given me a headache reading it all!


They basically seem to be trying to fit a round peg (the biomedical evidence - some of which they acknowledge in their review), into a square hole (their pet cognitive-behavioural model of illness.)