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Simon Wessely and "all in the mind"

Discussion in 'General ME/CFS News' started by Esther12, Jan 3, 2012.

  1. pollycbr125

    pollycbr125 Senior Member

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    'Oh yes, and last week it was fitness to fly as a pilot, and on it goes. There are the insurance medicals and forms that the readers of this document will be more than familiar with. But gun ownership? Do doctors really know who is suitable to own a gun? I was once asked by a government department to devise a screening form to assess this. I proposed one question "do you want to own a gun?" and if the answer was positive, then you were unsuitable. But GPs are supposed to know who is suitable to own a gun, just as they are supposed to know who is suitable to foster or adopt.'

    erm did I read that right if you answered yes to wanting to own a gun Simons says you are unsuitable ?

    Surely if you didnt wish to own a gun you wouldnt apply for a licence in the first place ?

    What about farmers ? who need a gun to control vermin ,, so if they answered yes even though they are a farmer they would be deemed unsuitable ?

    The more I read of Simon and his rantings the more he comes across as being the person who is delusional . Mindst you he cant complain can he , hes done rather well out of attempting to make everyone else look mad whilst able to make the most ludicrous and outlandish statements himself .

    The sooner this man is away from ME/CFS infact any health matters whatsover the better . It amazes me even further how he is allowed to make such ludicrous statements which are also usually rather derogatory at the expense of others yet he always seems to go unchallenged . Why is that exactly ?

    So any psychologists out there and I know there are some who disagree with Simons rantings , speak up its time this man vanished into obscurity with his theories .

    I am amazed he gets away with the things he says about gulf war vets tbh . How can anyone on earth possibly think that these men are making up their illnesses when they have often been subjected to noxious substances either in battle or in training . It made me laugh when Simon said he would feel safer in afghanistan , what an insult to the soldiers who have come back wounded or the families of those lost . . He really has no clue what these men have gone through but ask any soldiers wife and im sure he would get put in his place .
  2. Valentijn

    Valentijn Activity Level: 3

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    He took a swing at the 9/11 first responders too. Apparently they just have mass hysteria :p
    Enid likes this.
  3. Mark

    Mark Acting CEO

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    That's just standard Wesselyan Catch-22 logic.

    If Prof Wessely is an expert in anything, he's an expert in Catch-22. Here's the original definitive Catch-22 quote:

    Similarly, according to the new DSM draft guidelines, anybody who reports distressing pain which disrupts their daily life, and which their physician is unable to diagnose, may be diagnosed with a Simple Somatic Symptom Disorder if they either (a) persistently and 'disproportionately' think about the seriousness of their pain, (b) are very anxious about their health or symptoms, or (c) devote 'excessive' time or energy to their symptoms or health concerns.

    Thus, if you are in pain, and your doctor can't figure out the cause, after 1 month you can be diagnosed with a psychiatric condition of 'somatisation' if you make a fuss about it. You may avoid this psychiatric diagnosis only by ignoring your pain, not thinking about it, not being anxious about it, and not devoting much time to it - or at least, by not telling the medical authorities that you are doing so. What the medical professionals don't know about your pain can't hurt them.

    If you worry about it or try to do something about it, that means you must be imagining it into existence. If you ignore it, then it will just go away - from the point of view of the authorities, at least. By definition, then, anything that doctors are unable to diagnose within a month no longer exists. Anybody who persists in reporting such symptoms to their doctor can be diagnosed with a psychiatric condition. The doctor decides when the patient is having an 'excessive' or 'disproportionate' reaction to the distressing experience which the doctor can't explain.

    Therefore, if any patient makes a fuss about their unexplained symptoms, shouts loudly about them, expresses anxiety about them, or attempts to obtain recognition for them, then this is evidence to show that they must be somatising those symptoms themselves, and their very focus on those symptoms is the true cause of the symptoms. And hence all unexplained symptoms are neatly brushed under the medical carpet.

    (This change to the guidelines, we are told, has been proposed in order to reduce the stigma attached to such a diagnosis, by extending the criteria so that it applies to everybody. It is certainly not proposed by the American Psychiatric Association in order to increase the number of clients who may be referred to psychiatrists - be careful now, such irrational fear of psychiatry might be considered evidence of madness).

    It's some catch, that Catch-22.

    In short:

    Valentijn, Wonko and Enid like this.
  4. Esther12

    Esther12 Senior Member

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    The gun thing was just a little joke, to further indicate his membership of the reasonable in-group. I doubt many of them know farmers with legitimate reasons for owning a gun. I tend to find his sense of humour rather irritating (often self-aggrandising but presented as self-depreciating, reassuring to the powerful rather than challenging, etc... 'comedy' as a signalling device), but it's not a big thing..

    An obvious solution to the burden placed on doctors to make these sorts of judgements would be for the BMA to clearly state - 'We're not as well informed as you think we are, so rely upon and pay us less.' I don't see that happening. Given Wessley's willingness to expand medical judgements to psychosocial factors and trust doctors to do so competently, it does seem slightly strange that he realises doctors have no particular insight into who should own a gun, and that their judgements will be largely arbitrary. I don't think the gun thing really matters though.

    I find this funny in a piece written for UNUM, which he must have realised were classing people's physical symptoms as psychological illnesses in order to reduce their liabilities, and that his work was playing a role in legitimising this approach. Maybe he has a really narrow view of 'his' patients are?
  5. floydguy

    floydguy Senior Member

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    Wessley is clearly unable or unwilling to say "I don't know". That is where the crux of the problem lies. His ego is apparently so large he thinks he knows it all so anything that can't be explained after 3 seconds of examination must be the patient's fault somehow.
  6. Esther12

    Esther12 Senior Member

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    Simon Wessely has a new website, and he's put up a touching account of his personal story with CFS and the militant patients who hate him. If I hadn't read any of his work, or didn't have any understanding of the impact he has had upon how patients with CFS are treated, I'd be quite convinced by it. As it is, it seems to be a follow up to the recent coverage that's trying to portray critics of the biopsychosocial approach to CFS as necessarily being ill-informed, anti-psychiatry, militant terrorists - and it's all got me feeling increasingly militant myself. Starting with the utter disinterest with which patient concerns about how the results from PACE were spun, I've started to see CFS research, and certain researchers, in a really quite different light in the last year - and it makes it much harder to explain away the problems that surround CFS through just incompetence and prejudice.

    I decided to add my thoughts as I went through reading Wessely's piece.

    It ended up quite a bit longer than I expected, so I've added a few links to references and examples in there too (I was only planning to do a few throw away comments, but have ended up producing a rather lengthy screed).

    All the notation [n] was added by me, as I was planning to have my comments at the end. As they grew in length, I decided to paste them in to Wessely's text.

    http://simonwessely.com/faq.html





    [1] This seems to be a reoccurring theme of his recent pieces on CFS. You may think that things were bad with me, but they'd have been even worse without me!. To me it seems like a pretty limp defence, and an attempt to skew any judgements of his work to a much lower standard than should be acceptable.

    eg: Some thought that the problem was at best depression: Some? How many? Was it commonly being treated as a form of depression prior to Wesselys work? From what I've read of early medical papers, it was not, and it was Wessely's influence which caused much of the harm here, but a vague reference to some neurologists allows Wessely to act as if this was as much of a problem prior to his tinkering.

    It's hard to say for sure, but from what I've heard from patients who were ill around this time, it seems that patients were generally treated much better prior to the rise of Wessely's psychosocial approach to CFS in the 90s, things were then at their worst around 2000, and perhaps there has been some trend towards improvement recently.



    [2] Personally, I preferred his old writing style. He is better at making himself seem likeable (to a certain sort) these days though.



    [3] Its like he's describing some idyllic fantasy land compared to what he created for us. Imagine being so respected by your doctor that they felt willing to speak to you honestly, and baldly assert that they did not know what was wrong with you or how to help. Then you could be left to make decisions for yourself about what responses would be appropriate in such a situation. That sounds so much better than the distrust and lack of respect that develops when doctors feel they should manage their patient's cognitions.

    When I fell ill with glandular fever I was utterly reassured, then as I stayed ill, I was told how very effective CBT and GET were. I made a number of important life decisions based on the assumption that these claims were true. Maybe this positivity did aid functionality in some way (not that I was aware of), but it also caused a lot of serious problems, and has left me feeling rather cynical about the way in which CFS is treated.

    Maybe it did used to be more nihlistic, demoralising and depressing, but sometimes life is hard. Patients deserve to be spoken to honestly and clearly. Perhaps, if one had clear evidence that disability amongst those with CFS was solely the result of cognitive factors, then it would be acceptable to allow pragmatic concerns about outcomes to affect the information provided to patients - but in fact, the evidence would seem to indicate that this is not the case.

    The paternalistic and pragmatic psychosocial approach to illness promoted by Wessely might be more positive and encouraging, but it also leads to the sort of distrust and animosity which surrounds CFS, along with the wide range of social problems it has resulted in outside of strictly medical settings (eg: the way insurance companies, welfare, friends and families can be led by psychosocial theories to treat people with CFS as if CFS is the same as depression, caused by deconditioning, the result of a fear of exercise, etc).

    Also - the list of old recommendations would seem to indicate that it was not being commonly treated as a manifestation of depression prior to his involvement.




    [4] There have been a couple of recent threads looking in more detail at his early epidemiological work, and it seemed like the data didn't really support some of the conclusions he drew, but there was probably still some useful data collected.

    His 'yuppie flu' work is generally fine imo... although it's a bit sad to have this listed as one of the top contributions he's proud of - there are always going to be ways in which people try to blame people for their own misfortunes, and the yuppie flu stereotype was probably preferable to the ones Wessely replaced it with. I think Wessely did do some worthwhile work on CFS, but often in such uninteresting areas that his results are still of little real value. The assertions of those who wanted to lump together everyone suffering from chronic fatigue and make broad claims about their personality were always clearly morally unacceptable - it was such an arbitrary and bigoted thing to do, and never supported by compelling evidence. Those sorts of lazy stereotypes can be dealt with through a brief conversation or moral debate, and dont need the massive research funding that they've sucked up.

    Despite his work debunking the specifics of certain stereoptypes, the pragmatic psychosocial approach to CFS which Wessely adopted did help provide the cover needed to legitimise those wanting to take these prejudicial approaches to CFS patients. I don't see how any work in this area can be seen as a significant achievement.



    [5] So he restrained some of the harm he'd earlier done? Another problem with this, is that once an excuse to dismiss the suffering of others has been unleashed, its very hard to put it back in the bottle. In promoting the notion that CFS was a manifestation of depression amongst those who did not want to acknowledge their own psychological difficulties, Wessley provided an excellent excuse to those doctors who wanted to move responsibility for the hardships of CFS on to their patients, even if he did not intend his work to be interpreted in this way. If he wants to take a pragmatic psychosocial approach to patients, he also needs to take a pragmatic psychosocial approach to his own work and responsibilities, and here it seems that he has done more harm than good.

    While the evidence is now against the understanding of CFS as depression, this view continues to be a major problem in doctors surgeries, amongst benefits assessors, insurance companies, and so on. People in positions of power and authority do not seem to like letting go of excuses for blaming the weak for their own hardships, and absolving themselves of responsibility to help.



    [6, 6a] I don't think I've read the hydrocortisone study, but a quick google seemed to indicate that it was a follow up to a US study, so repeating an RCT on an unsuable treatment doesn't seem that great an achievement.

    The HPA work is okay, but its only real use has been fighting back against the earlier psychosocial quackery that viewed CFS as a manifestation of depression, and my understanding is that this was also follow up work. Again, Wessely has been involved in some fine work in this area, but it does tend to involve lumping together everyone with chronic fatigue, and using the Oxford crtieria for CFS. I do rather worry that Oxford CFS leads to studies on a general response to illness which do little to help us understand the specific causes of illness for those diagnosed with CFS, but I don't really have sufficient understanding to comment properly upon the significance of these findings, and it could be that they will be looked back upon as a worthwhile achievement (it should also be remembered that Wessely expected different results, and was surprised by what was shown - so it's an achievement based upon him having been given funding to study CFS, rather than upon his own expertise having allowed him to correctly predict a particular finding).




    [7] What an achievement. As he said, other people were classing patients as suffering from post-viral fatigue at the time, and it was Wessely and Chalder who took a sceptical view of patient claims that their illness started with a viral infection rather than anxiety or emotional strain. Even though it is now again accepted that certain viral infections do play a significant role in this area, I think that the biggest impact Wessely and Chalders work in this area has been to promote a culture in which the claims of patients suffering from chronic fatigue are instinctively distrusted, unless objective evidence is available to support them. This has helped undermine the basic moral assumption that patients should be treated respectfully and with a presumption of equality. I don't think its a great achievement.

    Lumping 'post-viral fatigue' in with 'CFS' never seemed particularly sensible either, even if there could not be a clear distinction either.



    [8] I don't know much about this, but its entirely possible that he did do good work in this area. Also, I think that the PACE CBT guidelines include a section about hyperventilation causing fatigue, so this tale is one which those taking a psychosocial approach to CFS still seem happy to use when it suits them,



    [9] I'm not sure exactly what he's referring too. There was work which claimed that cognitive difficulties in CFS were likely to be the result of reduced effort, and didn't seem terribly convincing. I can't really comment here as I'm not sure if I read the specific paper he thinks made a substantial contribution to our understanding of CFS. I have read some of his work in this area that I thought was poor, but he probably did some worthwhile pieces too.



    [10] Again, I'm not certain what he's referring too. I think he (or colleagues) did some follow up work on immune abnormalities which tried to imply that they were likely to be the result of behavioural or psychological problems. I wish he'd cited the specific papers he's referring too, but I'm sure we could track them down if we decided to do so.



    [11] I guess that's an achievement, by the standards of CFS research, although checking to see if people with an illness get better doesn't sound like a particularly great intellectual leap. I couldn't find the actual paper, and did google for this one. The recent Crawley papers in this area seem to have been written primarily to try to get more money for her treatment centres, and Wessely does seem to be rather implying that there are more effective treatments available for CFS than is the case, but the papers could have been a more genuine achievement.



    [12] So this is his spin against those critical of the emphasis given to psychological research? He hasn't referenced the papers for us to look through them, but I remember looking at the autonomic one specifically because he had mentioned it previously as evidence that he does not just focus on psychological research. Its worth bearing in mind that its a follow up study, after others had already found evidence of this abnormality. This is from the conclusion:

    We conclude that some autonomic dysfunction is present
    in CFS patients, the most likely explanation being physical
    inactivity. Testing patients before and after physical activity
    is restored, such as with graded exercise therapy or cognitive
    behaviour therapy, could help confirm this suggestion

    If that's his conclusion, fine, but I don’t think he should act like these sorts of papers are not part of his psychological work, or the promotion of the view that CFS is best treated as a cognitive-behavioural problem.



    [13] And we did psychological studies as well? As well as the clearly non-psychological studies above? How much of this is just uncited spin that would be a chore to properly check up on? This is a very strange summary of his psychological work, and would seem to imply that he had moved people away from viewing CFS in psychosocial terms.

    [14] Patients who hate you do not do so because they are just anti-psychiatry Simon - from what I've read, it seems largely to be because of the specific approaches which you as an individual have taken to their illness, and the impact this has had upon their lives.

    re the personality stuff - This is still on-going! Just look at the piss-poor Nater studies coming out of America. And this harmful quackery has been legitimised by a psychosocial approach to CFS, even if Wessely happens to disagree with these aspects of it (and he never seems to publicly complain about those aspects of CFS research anyway). Chalder is still pushing hard on the 'perfectionist' association, as a casual glance at her recent papers will show.

    Regardless, we've already seen pioneering psychosocial clinicians who take it upon themselves to modify predisposing personality style amongst CFS patients as part of their NHS funded therapy. What a disgusting way to treat other individuals, and what an utter surprise that, as evidence builds that these modifications were unwarranted, no-one will be held accountable.

    While the recent Nater studies are particularly nasty pieces of spin, I'm not actually that convinced by any of the work around personality and CFS. The studies that claim to show there is no CFS prone personality aren't that great either. I don't think our understanding in this area is good enough to make definitive statements - but that doesn't undermine our moral responsibility to treat each other fairly and as individuals. Given the available evidence, it’s no more acceptable to talk broadly about the dysfunctional personalities and coping methods of CFS patients, as the dysfunctional personalities and coping methods of African-Amercians - and I think that research in this area should only be done with great care. Given the flimsiness and often transparently prejudicial nature of the evidence used to attempt to claim this is a worthwhile area for research, I don't see any good reason for prioritising the funding of work in this area whatsoever.




    [15,16,17] So much depends upon the specifics here, and there's so much which has been discussed at length elsewhere upon this forum. Wessely comments here are so general as to be virtually meaningless, so there's not much to dig my teeth in to.

    Wessely's treatments seem able to raise some subjective questionnaire scores somewhat... but we've seen that this doesn't seem to correlate well with objective measures of disability, like actometers. If you build a good relationship with a patient, and say you are trying to help the patient recover, then the patient will often want to talk positively about the impact you have had upon their life... at this point I'm not sure there's any more to it than that. On top of that, the specific approaches promoted by Wessely have caused social problems for CFS patients which will not be picked up in RCTs when patients for all groups are drawn from a similar social setting.

    Based upon the available evidence, it looks to me as if the treatments promoted by Wessely are not effective enough to justify the cost of provision, or much in the way of further research funding, even if you ignore this social harm done outside of RCTs by their paternalistic pragmatism. The way in which their efficacy has needed to be spun by proponents would seem to support that view (eg Esther Crawleys paper for NHS commissioners which claimed that 30-40% of patients recovered following CBT/GET in PACE) (Tate Mitchel focuses upon the spin that came before Crawleys paper, but still explains what happened here:http://forums.phoenixrising.me/showthread.php?15645-PACE-Trial-summaries-critiques-links-thread-no-discussion-please&p=232925&viewfull=1#post232925)

    re “During that decade we showed that you could even get good results in the most severely disabled patients (either in wheel chairs or bed bound) using the same principles, although it was never possible to do an RCT.”

    Has he forgotten the FINE trial. Ate up over a million quid? Sat along PACE as the pair of big CFS RCTs, and the peaks of psychosocial pragmatism in CFS? Specifically designed to be able to include those who were severely ill and unable to attend clinics? According to the outcome measures specified in the trial’s protocol, pragmatic rehabilitation was no better than the control group (even if the write up tried to spin this slightly)? Ring any bells.

    It did have some significant effects upon those involved though.

    Orla looked at some of the materials provided by Pauline Powel (final author on FINE) here:http://forums.phoenixrising.me/showthread.php?3952-Psychiatric-Theory-in-practice-Liverpool-CF-CFS-Clinic-Patient-handout&p=60302&viewfull=1#post60302

    Pauline Powell certainly seems to love those positive cognitions which help instil a sense of personal control in patients, and a confidence in the assurances given by medical staff:

    “As medical research and tests have shown, there is no hidden disease: therefore activity can do no harm when performed at a level matching your fitness.” (p51)

    “On Restarting exercise after a cold or setback it says : Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else." (p965)

    Its a shame that the deconditioning and cognitive behavioral model these claims were based upon seems to be such bullshit, and the therapy it led to so useless. Those clinicians carrying out the treatment may not have known that though, and could have believed that the claims being pragmatically made were actually true. We know how our beliefs and expectations can guide our view of reality, so how would these therapists interpret the poor results of the treatments they were being paid to provide?

    “There have been one or two times where I have been worried because they have got
    angry at the patients that anger has been communicated to the patients. Their
    frustration has reached the point where they sort of boiled over there is sort of feeling
    that the patient should be grateful and follow your advice, and in actual fact, what
    happens is the patient is quite resistant and there is this thing like you know, The
    bastards don’t want to get better”

    http://www.implementationscience.com/content/pdf/1748-5908-6-132.pdf

    Those bad patients (on reading that above paper, one has to keep reminding oneself that the trial found the difference this intervention was not found to lead to a significant improvement in outcomes compared to the control group, and the control group had no significant improvement compared to no treatment - so some patient frustration at the effort required to follow a useless treatment programme that involved the promotion of unreasonable and probably false cognitions was probably justified). Those writing the paper did not seem keen to dwell upon the failings of their ‘treatment’.

    It should not be a surprise that promoting a pragmatic and positive view of CFS would lead to patients being blamed, and having to live within a more hostile social setting. These sorts of social problems may not show up in the results of a Chalder Fatigue Questionnaire at the end of an RCT, but they are still rather important. Maybe not to those who want to be paid for their ability to treat CFS.

    There’s already a discussion thread here on the above paper (and on FINE of course), so I won’t go into any more detail here.




    [18] Well, we can all agree that angry CFS patients are not responsible for the quality of his work.




    [19] There are quite a few niggles about the last few paragraphs that I can’t be bothered to go in to. I’m not surprised he’s proud of himself, what he’s been able to achieve, or believes that Chalder and her team are going from strength to strength.

    Trudie Chalder was reduced to trying to claim that patients were back to normal following CBT/GET, by defining normal in a way that overlapped with the levels of fatigue and disability which had been required for inclusion at the start of her trial, and then taken to indicate severe and disabling fatigue. (Originally an SF-36 PF score of 85 was needed to indicate ‘recovery’, while a score of 65 was taken to indicate ‘severe and disabling fatigue’. In order to spin her results Trudie was later claiming that those scoring just 60 were ‘back to normal’.) She did this in a press conference where it was explained that their results would be controversial, but it was not made clear that this was because of the dishonest way in which they had spun their results - I seem to remember there being an implication it was because of the stubborn rejection of psychiatry of certain patients instead (I really can’t remember this one though). Some of the details are in Tates piece on PACE that I posted above. Chalder’s a fine example of Wessely’s legacy, and why he is so hated.



    [20] If hes talking about specific threats of violence or similar, then that's fine. They do represent just a tiny minority of patients. However, seeing as the only specific example of a 'threat' we've had in the recent media coverage was Esther Crawley being sent an e-mail that said "You will pay", I'm not sure how significant a problem this is. The writer could have been naive rather than threatening. It would be good if Esther Crawley were held accountable, and made to pay for the false claims that she has made about CFS (eg: the 30-40% recovery rate mentioned above), but given the way that British society struggles to ensure that no-one in a position of authority ever has to pay any price for the harm they inflict upon others, one would need to be rather optimistic to think that she ever will. I'd have thought she'd be pleased to see an example of such a positive social cognition.

    I think Wessely will find that rather a lot of real patients hate him though, certainly of those who have read his work, even if they would never dream of sending a threatening sounding letter.

    The massive concern that surrounds these threats or intimidation does seem rather out of proportion, considering the lack of concern that surrounds the injustices faced by those with CFS. If GPs, insurance company assessors, or benefits tribunal are misled into believing that CFS is the result of patients refusing to accept their depression, then that has much more serious consequences than the receipt of a threat or expression of rage sent through cyber-space.

    As the complaints of 'intimidation' have been presented as including anger about the way in which the results from PACE were spun, or the making of freedom of information requests, I would like to consider myself an INTIMIDATOR. This very thread could count as dangerous militancy. When I am well enough, I will cruelly take the time to read through papers, and check to see if the citations or statistical claims are accurate. When they have been used in a misleading way (pretty often), I make it clear that I think such quackery is unacceptable, and should not affect the way in which patients are treated. I do this because I want to stifle bad research. I even want to achieve the removal of those researchers whose work cannot be trusted. Beware my fearful presence CFS researchers! It is probably my fault that so little worthwhile CFS research occurs. If only I knew my place.

    Maybe I'm being too flippant about the rise of CFS terrorism, as there certainly is a lot of anger around Wessely, but given the paucity of evidence that there is any real reason for concern, and the history of spin that surrounds the people making these complaints, I'm concerned that the fears reported to the media are more about discrediting their critics, than there being any real threat. The BMJ piece on this was particularly absurd, given that they had previously described patients who were more ill than was needed to be classed as suffering from severe and disabling fatigue following CBT/GET as 'cured', and made no reference to this as a possible reason for patient ire over the presentation of results from PACE - it was all just anti-psychiatry.

    Given the anger and hatred which has been prompted by Wessely's work, it's certainly not impossible that there is some under-ground militant organisation to be concerned about, but if this fuss is just about mistreated patients expressing their rage with empty threats, then I can't be that concerned, even if it does scandalise polite society. The suffering of those in positions of power and authority always seems to be taken rather seriously.

    [21] Hes like Jesus, with his crown of thorns. Father, forgive them, for they know not what they do.

    [22] I wonder how he feels about the quote I extracted in the first post of this thread. Or the one from the autonomic paper above.

    But this is a legitimate complaint, and something that I really hate. There has been a problem with some CFS documents floating about that took quotes out of context, and were littered with misleading ellipses. Some patients still stumble upon them and take them seriously - we had this thread recently:http://forums.phoenixrising.me/showthread.php?13562-Simon-Wessely-Quotes. It didn't last long though. Out of context quotes are not the primary reason that Wessely is hated by patients. Most of the discussions of Wessely and his work are based around full papers which are linked to, or press articles which are linked to.

    There are also genuine difficulties in saying exactly what it is that Wessely believes about CFS, as he tends not to say, but to instead construct narratives from anecdotes and studies he chooses to cite. Maybe this is to avoid controversy, but it explains the 'weasely' nickname and I think it plays some role in the way in which his views can get misrepresented.

    Its always bad when people are attacked unfairly, and we should all be working to stop that occurring (I've defended Wessely and his colleagues through gritted teeth a few times), regardless of what legitimate complaints there are about them and how they have affected the way CFS is treated. I'm not really sure what can be done to improve this. Really, I don't think that we can expect a higher level of discussion on CFS forums than on any other general forum, like mumsnet. We've recently had one poster start about 12 threads in 2 weeks claiming that CFS is HIV- AIDS, and that's the price of having a place where people are free to post whatever they think. It would be a full time job to check the accuracy of every post, and a really boring one at that.

    There probably are times when I've seen a purported quote from Wessely which didn't look right, and I failed to challenge it in order to avoid being sucked in to some internet debate, and that's a bad thing for which I probably do owe him an apology. It would be better if we could do more to self-police, and it is unfortunate that there don't seem to be any posters who have read much of Wessely's work and yet are still supportive of it, as without those voices biases and group think will occur. Equally though, that there seem to be no patients who have read much of Wesselys work and yet are still supportive of it is somewhat unsurprising, given the nature of his work.



    [23] If you read something favourable or flattering about him or his colleagues, you should check to see if that’s true too. If you read something that presents Wessely’s autonomic research as distinct from his psychological work, make sure that you read the paper. If you read that he is only hated by those who do not read his full papers, or are opposed to all psychiatry, or resent his ability to successfully treat CFS, or any of the other recent claims, make sure that you take the time to check if this is true. If a researcher or doctor claims that PACE showed a recovery rate for CBT/GET of 30-40%, make sure that you check their citations. Some people will stoop to the lowest tactics.

    [24] Following on from the distortions that surrounded the PACE trial, the peak of the psychosocial approach to CFS, this ending is just hilarious.



    As his list of his own achievements was rather lacking, I thought I’d do an alternative top 3 of real personal achievements for him:

    1) He built up his own career. I think that this was his primary aim, and by his own standards, I think he succeeded. He made a name of himself by producing papers that appealed to the prejudices of British medical society about a group of unpopular patients, and provided a quasi-scientific justification for those who wanted to just tell CFS patients they were being too sensitive and should go on anti-depressants. No wonder he was popular amongst his colleagues. I'm not saying that he intentionally and cynically set out to do this, but it is what occurred. He also now gets to spout guff about CFS being "a metaphor for our times" and what not.... I get the impression that he loves being that sort of naff academic: 'You may not appreciate such things, but the PACE trial was a particularly elegant piece of work - a cheeky coquette of an RCT'. [To be clear: He didn’t say this... it’s not as far from what he’s said as you might hope though].

    2) He earned a lot of money. While its not clear what perks from the private sector he’s picked up as a result of his CFS work, he’s certainly been able to provide for well himself and his family. For most people, that’s a significant personal achievement.

    3) If you ignore all of the bad work, and problems he’s caused, he has also done some okay CFS research. I’m sure of it. Nothing great. Nothing that really moved things foreward (other than partially undoing some of his own past mistakes), but by the low standards of CFS research, some okay stuff. Even if his population based work tended to use the Oxford criteria, and just lump in everyone together, he still made fair points about the danger of selection bias when looking only at patients in clinics - it seems kind of obvious, maybe in retrospect, and only seems to have had implications for psychological work... but still. He did that comparative epidemiology paper on CFS in the UK and Brazil which would seem to undermine a lot of his own claims about the culturally derived nature of disability in CFS - good to try to test ones own theories... even if the result doesn’t seem to have had much impact upon the way he talks of CFS. Really, I guess that study was just a waste of time and money, wasn’t it? Hes not that good at apologising, is he? Even if I can’t really think of any now, he has probably been involved with enough okay-ish papers, for them to add up to one achievement point.

    I am really surprised by his own list of achievements. There's not much there, considering the impact and influence he has had.

    I think that the biggest effect that he has had has been in the promotion of the notion that patients suffering from chronic fatigue without a clear medical explanation should be lumped together, and treated as if they were suffering from a psychological condition ('whatever that means' etc), which requires that the cognitions of patients be pragmatically medicalised and assessed in terms of functionality by the medical staff who ‘care’ for them; because of their diagnosis, rather than the identification of any particular cognitive distortion. I'm genuinely interested to know if he sees that as an achievement to be proud of, or a mistake he regrets. Does he think it was wrong to impose this experimental expansion of the medical purview without requiring the consent of patients? Does he think that medical staff were fit to take on these additional responsibilities competently, or that the regulatory framework was fit to deal with the problems that occurred? I don't think we'll ever know, as his writing style seems to have now 'improved' to the point that he no longer really says anything, but simply works on creating the impression of a likeable, gentle academic.

    The recent disability benefit reforms have been heavily influenced by his (and others like Aylward, who himself was heavily influenced by Wessely) biopsychosocial rehabilitative approach. It would be entertaining to hear Wessely's views on them now that they’re so widely recognised to have saved money by making life much harder for the sick and disabled in this country. There’s plenty of discussion of Wessely, Aylward, and the biopsychosocial welfare reforms elsewhere too, even if Wessely has stayed strangely quiet about the fruition of his work, and it’s impact upon others.
  7. Esther12

    Esther12 Senior Member

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    double post
  8. Esther12

    Esther12 Senior Member

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    edit: I'm adding a random handful of Wessely papers in addition to what has been pasted so far, just to provide a taster for people. I think that it's quite difficult to understand his approach, particularly if one has only read a few papers, so do not think that reading only these papers would be sufficient to allow one to make much of a judgement upon his work and impact. I didn't try to pick particularly 'bad' papers, but did avoid papers that were just negative findings, or didn't seem to say much, and tried to post more papers about how patients should be treated (although couldn't find the full paper for this one: http://www.sciencedirect.com/science/article/pii/S0163834397803155 )

    Management of chronic (post-viral) fatigue syndrome: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/

    Wessely Slater speech notes from 1994: http://www.meactionuk.org.uk/wessely_speech_120594.htm

    ATTRIBUTIONS AND SELF-ESTEEM IN DEPRESSION AND CHRONIC FATIGUE SYNDROMES: http://simonwessely.com/Downloads/Publications/CFS/12.pdf

    Symptoms of low blood pressure: a population study: http://simonwessely.com/Downloads/Publications/CFS/13.pdf

    History of postviral fatigue syndrome: http://simonwessely.com/Downloads/Publications/CFS/20.pdf

    VIRUSES, NEUROSIS AND FATIGUE: http://simonwessely.com/Downloads/Publications/CFS/45.pdf

    Chapter from a book (the amount available on google seems to vary): http://books.google.co.uk/books?id=9ApwLj7Tmr8C&pg=PA224&lpg=PA224&dq="fear may result not only from the provision of negative information"&source=bl&ots=8EEnxHh_wH&sig=bCb4Bx0dknYBWNZ8sfc2YKZYTb4&hl=en&sa=X&ei=jrIhT-iLHIeQ8QPql93CBw&redir_esc=y#v=onepage&q="fear may result not only from the provision of negative information"&f=false

    There is only one functional somatic syndrome: http://bjp.rcpsych.org/content/185/2/95

    Health for me: a sociocultural analysis of healthism in the middle classes: http://bmb.oxfordjournals.org/content/69/1/197.full
  9. Dolphin

    Dolphin Senior Member

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    Well done on this piece, Esther12. You get across some of the criticisms, explaining why patients (and others) are annoyed.

    Of course, as you say yourself, it doesn't cover all the points. But then if it did, this would be a piece that was much longer and it's probably long enough as it is!
  10. Esther12

    Esther12 Senior Member

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    Thanks Dolphin. I could edit in some links to papers, but it would be impossible to give anything more than the briefest of oversights. I found that I needed to read quite a lot of his work before really getting to grips with what he was saying, or how he was approaching CFS... and I still don't feel entirely clear, particularly as to what extent he has changed his mind about things.

    I was reading an older post of mine about how people will tend to react negatively to any CFS patients expressing personal animosity towards a researcher - I still think that's true, but it's difficult to talk about Wessely's impact upon CFS without explaining why many patients will hate him, unless I was to write in a rather weaselling manner just in order to seem more respectable.
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "The lady doth protest too much"...he knows he's about to get caught out for his evil deeds and thus is trying to lay down a trial of obfuscaiton and "look, see I'm an innocent man!" bullshit, blech.

    Anyway, the bit on the guns issue, to show what an dipshit he is:
    considering he has Jewish family who died in the Holocaust, one passage from history should have been known and thus conscience-pricking to him:
    ie weapon control is one of the primary acts of dictatorships. He should have known that from history and its consequences.

    Guns are just tools, wish to goodness people would "grow a pair" and accept such
    all weapons, nuclear power, even armies, are "tools", it's NOT the tool that is ever the problem, it's the damn people who misuse them!
    if you have an irrational fear of weapons, or morbid or worse desire to use them to inflict suffering/uneedful death, that person has a problem.
    Never in my life have I seen a gun or a knife jump up, magically, and attack someone! :p

    Keeping highly dangerous weapons out of the hands of dangerous criminals or those with certain mental problems, or kids, is fine, same as with cars or any other dangerous item, due ot serious, actual threat of misuse. You can't ban everything because you THINK someone may misuse them for goodness sake (or rather "fear they'll harm you with them", which is the reality).
    But they are just inanimate objects, they ain't "black magic doomsday weapons" for goodness sake, jeesh!
    Death tolls from alcohol, tobacco and road traffic accidents vastly outweigh all those killed by weapons across the globe, and in the UK, common household tools form knives to screw drivers, and feet/fists are the primary weapons used in homicides, want ot ban those, too?

    The mindset Wessely shows, which is common and not merely an issue with him, is the scary thing, it's always about "if I make sure you don't have guns, you are no threat to me" and that's arrogant and damn stupid anyway.
    most of the "spree killers" and violent criminals have shown long before their acts, serious mental or criminal issues, and were not disarmed or given long enough jail sentences, that's the damn problem.
    UK was going so far down that stupid path they were even thinking of banning pointed kitchen knives, OMFG!!!

    Note, I live in one of the most violent places in the "Western" World, I'm very well aquainted perosnally, with violence (had knives pulled on me three times and stabbed once), and more importantly, I udnerstand the causes and consequences of violence first hand, not from "pie in the sky" approach :p
    You can cure much of the social ills of all nations by doubling or trebling the minimum wage and letting all pople have free eduction at alllevels, that would save vastly more lives than gun control ever would, but that is antithical to the greedy, sick demands for power and greed and dominance of those Wessely and his ilk serve.

    Educated, healthy, secure, reasonably contented popualce has little violent crime, but God forbid making the "Scumbag proles into near Middle Class! Can't have that, they must remain the Untouchables and live on crap wages and full of angst and hurt and anger and ill health and thus crime, to keep the Middle Class in fear of them, or falling down into that cesspool!"....bah!
    Elite sure don't want that to occur, hence the "Weasels" serve part of that huge system of control and dominance.

    (personally, I like air guns for "plinking", it's about Zen, and much safer than firearms, as firearms huge range of danger due to ballistics is a serious issue when shooting them, much less of a worry in very spread out areas liek Highlands and Borders, US/Australia etc. But that's for my personal tastes/useage)
  12. Enid

    Enid Senior Member

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    I've one answer to the "all in your mind" gang having had it imposed by 3 junior Docs and psychiatrist foisted on me in Accident and Emergency following many collapses - it would be had I been able to talk at the time - and so are you at the moment unfortunately - pathetic bunch. It's about time they found a less destructive way of dealing with their gaps in knowledge. That's what he trying to cover up and the pernicious creep in medicine.
  13. Esther12

    Esther12 Senior Member

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    A bit OT, but I think it's more complicated than that. The easy availability of weapons will affect the way in which people interact with one another.
  14. Wonko

    Wonko Senior Member

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    yep, after a while the survivors may be really polite lol
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    there's a great line by a character in "Fallout: New vegas"

    "An armed society is a POLITE society!" :p

    Alas, issue is as said, always people.
    People can become complacement with firearms and come to grief, but that's same with every damn thing, alas.
    Again, see death toll on roads, 60% of which are from gross negligence, often involving alcohol.

    I , perosnally have vastly more statistical risk of harm from the non-firearm wielding drunks, junkies and scumbags in my locale', than most of you do from neighbours with guns.
    Psychology, firearms, banking, nuclear fission, vaccines, whatever....all can be used for weal OR woe: culture, personal mores/smarts are the thing :)
  16. alex3619

    alex3619 Senior Member

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    Hi SilverbladeTE, I recall the "armed society" line from way back. So far as I am aware, it was a famous line by the SF author Robert A. Heinlein. He wrote several books involving extreme right wing societies, so was called a Nazi. He wrote an extreme left wing life-is-wonderful book and so became the guru of the flower power movement. He just took an idea and went with the logical conclusion, its hard to say what his personal thoughts were. Bye, Alex
  17. oceanblue

    oceanblue Senior Member

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    Thanks for providing some much needed perspective on Simon Wessely's 'achievements'. You're right that he's very careful in how he phrases things so says very little directly but implies a lot. The HPA example you gave, where abnormalities were found but SW negelected to mention he attributed them physical deconditioning, is a great illustration of this.

    I did wonder how things would look for patients if SW had never entered the field. Michael Sharpe and Peter White were pushing CBT/GET independently but Simon Wessely has probably been far more influential as he's such a great communicator. I suspect that such behavioural therapies wouldn't have gained nearly as much traction without SW's cheerleading, and there might at least have been more room for doubt as to how best to treat this illness.
    Sean and Dolphin like this.
  18. Esther12

    Esther12 Senior Member

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    Thanks. It does make it a pain to pick apart what he's saying. He often does more to create a narrative than lay out an argument. Some of his writing just rests upon anecdotes and illustrative examples, but can still shape the way that others treat CFS patients because of his position.

    I think the length confused you oceanblue... I think you mean the autonomic results. The same has happened with the HPA results (in varying ways), although I didn't specifically mention it.

    re the impact of Wessely - I agree that it's difficult to say. I think it's fair to see him as one of, if not the, leading figures on promoting a biopsychosocial approach to CFS, and particularly as he did so under the banner of pragmatism, it's reasonable to hold him accountable for a fairly wide range of the problems it led to imo.
  19. Dolphin

    Dolphin Senior Member

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    S. Wessely has produced so many papers

    I think one way to justify focusing on him is the sheer number of his publications on CFS:
    http://simonwessely.com/cfspubs.html

    I am not an expert on the 1990s* but most people in the field (apart from Leonard Jason) don't publish 10+ papers a year for many years in a row.

    The only other name that comes to mind with lots of papers is Natelson.

    There may be an easy way to list people by the number of publications they have using some database (it might not have all the papers but might be a start) but can't think of it off-hand.

    There are people in the UK who have published quite a lot - but none seem to have done 100 in 10-12 years (or at least, that's my impression off the top of my head).

    * I wasn't closely following published papers that were coming out, contemporaneously, although I read quite a lot of papers now so see references to papers from the 1990s.
  20. Snow Leopard

    Snow Leopard Senior Member

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    Publishing a lot implies a great deal of influence/networking in the field. An investigator can only conduct so many experiments at one time and so more papers can only result from more networking/collaboration.

    I know a few people (in other scientific fields) that publish 10-20 papers per year and they're all stressed/anxious workaholics. Make of that what you will.

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