Simon Wessely's personal story (annotated)

This is a long post, so thought I'd also post as a blog. It was meant to be part of a discussion, so if you have any comments to make, please add them to the thread here:

For some reason, the forum's new software seems to have broken up the quotes from Wessely, and now I cannot fix this. This is just a software glitch, rather than my editing Wessely's words.

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 being necessarily 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 ended up with a couple of pages, even after editing down).

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.


Chronic fatigue syndrome has played a big role in my life. I first started to see patients with the illness as far back as 1987, when I went to work as a junior psychiatrist at the National Hospital for Neurology, usually known as Queen Square . It is breaking no professional secrets to say that the patients werent very popular with the neurologists who ran the place, some of whom seemed almost to be irritated by the fact that although many of the sufferers had neurological sounding symptoms, on investigation the same neurologists couldnt find any abnormalities to account for this. Some thought that the problem was at best depression, and even occasionally that patients might be making it up, a view that was sadly confirmed for the sufferers when their next port of call was myself. [1]

[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.

When talking of changing his mind on this to the Guardian, Wessely said "When I started out, I had been struck by the similarities between CFS and depression", and in an early CFS paper he concluded "Attribution of symptoms to physical rather than psychological causes was the principal difference between matched CFS and psychiatric controls. The symptoms of "postviral" fatigue had little ability to discriminate between CFS and affective disorder."

That paper saw the early birth of both the Chalder Fatigue Scale, and the Oxford criteria for CFS, neither of which are remotely popular with patients, and both of which seem designed to conflate CFS and affective disorder. Also, when the BMJ reported on the later development of the Oxford criteria, it was an unnamed psychiatrist, not neurologist, who said that excluding patients with depression from CFS would lead to a "vanishing study group".

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.

Anyway, I didn't then, and never have, thought that the patients I saw then, and the ones I still see to this day, are swinging the lead, as some put it. Instead, I became fascinated with the condition, and, even though I was pretty low down in the Queen Square pecking order, decided to start doing some research. It was the start of my academic career and for the next ten years or so it was the main, but not the only thing, that I was doing.
ometimes when one looks back, one gets a sense of why on earth did I do that? But not in this case. Yes, one would do some things a little differently. And yes, my writing style has improved over twenty years. But overall, I think that we (and like all medical research, it most definitely was a we) achieved quite a lot for the benefit of medicine and patients. [2]
[2] Personally, I preferred his old writing style. He is better at making himself seem likeable (to a certain sort) these days though.

Back then, and I am talking about the late 1980s, the illness itself wasn't really much known. The first media articles in this country had only appeared in 1982 I think. There were hardly any scientific papers some of them were pretty old by then, and a new generation of research was only just kicking off. The media tended to call it Yuppie flu, back then, an unhelpful stereotype. But perhaps the single most depressing thing was what happened to sufferers in the way of treatment, since the answer was very little. There were, and probably always will be, those who pushed various unproven and untested therapies, often from plush clinics in Harley Street, but for your average patient, the single most common piece of advice given was to rest, and wait either for the illness to go away of its own accord (and we soon showed that didnt happen very often) or for doctors to come up with a magic bullet. It was very nihilistic, and pretty demoralising and depressing if you were unlucky enough to be a sufferer. [3]
[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 with false but reassuring claims about recovery and the efficacy of treatments.

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. Being psychosocially managed in this way is not something I would have ever consented to.

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.

So what contribution did I and my colleagues make?
We set up the first proper epidemiological studies in this country.

As part of that, we were able to show that the label Yuppie Flu was a misnomer. In fact the illness was commoner in those lower down the socio economic ladder, not higher. Most of those in lower socio economic levels didnt use words like ME or CFS to describe their condition, and many of them were not being seen in hospital clinics, which is why the yuppie flu label had been used, but it was wrong. [4]

[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. Similar claims about the personalities of gay people best responded to with moral argument, rather than more research into the personalities of gay people.

Despite his work debunking the specifics of certain stereoptypes, the pragmatic biopsychosocial 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.

At the start I did think that this might be a form of what we called atypical depression, and early work suggested that there were definitive overlaps with depression. But we showed that about half of those with CFS at the Square werent depressed anyway. And then once I moved down to Kings, we did a series of neuro endocrine studies, in which one of the first findings was that there was a different neuro endocrine profile in CFS to that in classic depression. The same neurotransmitter systems seemed to be involved, but in a different way. [5]
[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 (and that's certainly what some took the view that CFS was a form of atypical depression amongst those who wanted to escape acknowledging their emotional problems to be), 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.

That led to a long series of neuro endocrine studies, largely led by my then lecturer, and now Professor, Tony Cleare. The work showed that the hypothalamic pituitary axis functioned differently in CFS to how it does in well people with a particular pattern of low diurnal cortisol. This finding is now I think the single most replicated biological abnormality in CFS. [6]
turn led to one of our first randomised controlled trials of low dose hydrocortisone. It worked, confirming that low cortisol was playing a role, but sadly its not a treatment that one can use over the medium or long term. [6a]
[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 worry that this 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, although I don't really have sufficient understanding to comment properly upon the significance of these HPA 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 expertise having led to a worthwhile finding. Wessely and his friends have sucked up a lot of CFS funding over the last two decades, and it would be surprising if they'd managed to come up with nothing at all).

We looked at how infection is related to CFS an obvious thing to do since so many patients told us that their condition had started with a virus, and one of the other labels for the illness at the time was postviral fatigue syndrome. We did a big study in primary care, in which we followed up over a thousand people who presented to their GP with an infection, and then the next person in the surgery who didn't. This study failed to show that common viruses such as influenza were triggering CFS. But at the same time, looking at more severe infections, we showed that viral meningitis definitely did. Meanwhile our colleague Peter White at Barts produced the definitive study that linked the Epstein Barr virus, the virus that causes glandular fever, to CFS. We went on to replicate that, and look at what predicted early symptoms versus late symptoms after confirmed EBV. [7]

[7] Amusingly, their award-winning and widely cited paper doesn't seem to show what they claimed. There's a worthwhile discussion of this by @oceanblue here:

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 (they'd been using scare quotes around "postviral" for some time). Even though it is now widely accepted that certain viral infections do play a significant role in this area, I think that the biggest impact Wessely and Chalder's work in this area has been to promote a culture in which the claims of patients suffering from chronic fatigue are instinctively distrusted, and their explanations of their ill health seen as attempts to avoid acknowledging emotional problems, 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 it's a great achievement.

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

Back then, another big theory around was that CFS was due to hyperventilation. We linked up with our chest physicians, and showed that it wasnt. [8]
[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,

Sufferers didn’t just have physical fatigue and fatigability, they had mental fatigue and fatigability as well. So we did a neuropsychological study, using something called the CANTAB battery of neuropsychological testing, and showed that although most cognitive function was normal, patients did have problems with selective attention. CFS wasn't dementia (as some were saying) but there was a higher level cognitive impairment. [9]
[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 or anxiety, didn't seem terribly convincing, and now seems to have been contradicted by more recent research. 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.

We teamed up with our local immunologists. We found evidence of an increase in a particular subset of cytokine producing immune cells, confirming a mild immune activation, although we were not sure of the cause. It is possible still that this is a reflection of either sleep deprivation or the low levels of circulating cortisol hormone that we had earlier demonstrated. Its a pity that this still isn't really sorted. At the same time we showed that immune dysfunction didn't relate to clinical outcomes. [10]
[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, as it's otherwise difficult to know exactly what he wants to take credit for.

Which takes us to prognosis in a much cited paper we showed that the prognosis of patients attending specialist clinics was rather poor, especially if they weren't treated (as they usually weren't) but we also found evidence that the situation was more optimistic for the less severe cases seen in primary care, and also children. [11]
[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, and less of an exercise in spin.

We did a lot of biological studies you can see from the paper list on the website. We published on vitamin levels, the autonomic nervous system, HLA antigens and other genetics papers, growth hormone, why you need to test for celiac disease, anti nuclear antibodies, neuro imaging, DHEA and others. No, we didn't find the elusive biomarker, but it was not for want of trying. [12]
[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 the conclusion he wants to argue for, that's up to him, 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. Given this conclusion, it's utterly unsurprising that other UK researchers showed little interest in this area prior to Newton's recent work.

And we did psychological studies as well. [13] We published papers showing differences between CFS and depression, but also in a long series of work spanning many years established that previous depression increases your risk of developing CFS later in life, or after you are exposed to an infection, something confirmed in several studies now. We looked at personality linked to the yuppie flu stereotype was a perception that sufferers tended to be perfectionistic, hard driving people. We found that once you controlled for the effect of chronic illness, there was no such thing as a CFS prone personality. We also showed that our patients were not anti psychiatry, which was in contrast to some of those who were writing about this on the internet. [14]
[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. He's rather ambiguous about the findings on CFS and perfectionist all-or-nothing mentalities, isn't he? It almost sounds like he's saying he debunked any association. Someone reading this without having read Wessely's work would end up with a very strange view of his impact upon the lives of CFS patients.

[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 human beings, 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, gays or Jews. Research in this area has not been done with sufficient care, and patients are right to be angry about this. 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.

Whilst at Queen Square I had met up with Trudie Chalder, then working as a behavioural nurse therapist on the same ward. It was the start of a 20 year collaboration that is still going strong. We talked a lot about CFS, and why everyone seemed to think that nothing could be done. So in 1989 we wrote a paper advancing a theory, which was that cognitive and behavioural factors might help explain not why patients got ill in the first place, but why they weren't getting better. And from that we developed a specific intervention for CFS, adapting something known as cognitive behaviour therapy, which was already achieving considerable success in the pain world. So we first of all simply tried treating 50 patients at Queen Square, with good results (1991), and perhaps most interestingly, with improvements that could still be detected some years later.

Then in 1991 I got a consultant/senior lecturer post at Kings College Hospital. I set up what was one of the first NHS only services exclusively devoted to CFS patients - still going strong today, with Trudie, now Professor Chalder, in charge. We got a grant to do what was needed, which was an randomised controlled trial (RCT) of CBT, comparing it with the same number of sessions of relaxation therapy. CBT performed well. At the same time Mike Sharpe at Oxford, now Professor Sharpe, had independently developed a cognitively behavioural approach to treatment and carried out a trial that had similarly positive results. We both published our results in 1997. [16]
A lot of work followed that. 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. Trudie opened a clinic for families with children with CFS, and developed a new way of delivering family oriented CBT, which has been the most successful intervention of all. We tried new ways of outreach, such as telephone CBT, and even now Trudie is leading on a study delivering home based treatment to adolescents who are too sick to even get to the clinic. [17]

[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 subjective questionnaire scores somewhat... but we've seen that this doesn't seem to correlate well with objective measures of disability, like actometers, and the PACE trial showed no improvements in employment outcomes, or claims for disability benefits. 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: , some recent BMJ comments dig into more detail:,,,,

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:

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”

Those bad patients (on reading that above paper, one has to keep reminding oneself that the 'treatment' 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 their own failings.

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.

Meanwhile, my own career was changing. In the mid 1990s I became interested in what was then called Gulf War Syndrome, because first of all the symptoms that some of those who had served in the 1991 Gulf War sounded remarkably similar to those that I was already extremely familiar with in the CFS clinic, but who were in other ways rather different to the Gulf veterans. Secondly, I had by that time completed my Masters and Doctorate in epidemiology, the study of disease in populations. If ever there was a problem that needed an epidemiological approach, this was it.

And so I s
et up the first large scale cohort study looking at a random sample of gulf veterans compared to British military personnel who had served elsewhere. The work took off, and was both challenging and exciting. It was the beginning of what turned out to be a long term engagement with our Armed Forces. I established something that we called the Gulf War Syndrome Research Unit, which later turned into the Kings Centre for Military Health Research.

And it was the right time for me to disengage from CFS. Right from the start, myself and all my colleagues had from the start been targeted by a small group of activists, who mission was, and still is, to impede our work in as much as they are able. Thankfully as the above demonstrates, and perhaps even more the continuing success of the research programme without me at the helm, they haven’t succeeded and won’t. [18] But as the principle target of the aggression, it wasn’t very pleasant personally. I gradually realised that it was going to be increasingly difficult for me to continue to make a positive contribution in this atmosphere, and it was a good time to move on. Plus I was really loving the work with the military.
[18] Well, we can all agree that angry CFS patients are not responsible for the quality of his work.

And so I did. Of course you can’t just switch off a research programme overnight. Existing grants need to be supervised I had just taken on a new ph d student who turned out to be a real star, and together we were publishing papers from his thesis up to a couple of years ago. We even finally published last year a paper based on data that we had collected during the longitudinal study of the outcome of viral infections that began in 1991. But the research and clinical unit was handed over to the more than capable hands of Professor Chalder and her team, and I am pleased to say goes from strength to strength. My main research interest has been for many years the health of the UK Armed Forces, as you can tell if you look at my publication record. And I am afraid that I have also become a university bureaucrat I became Head of Department, then Vice Dean, where I have responsibility for the whole of academic psychiatry here at Kings and the Maudsley (an awesome legacy to follow) and the largest medical postgraduate training scheme in the world. [19]
[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 Tate's piece on PACE that I posted above. Chalder’s a fine example of Wessely’s legacy, and why he is so disliked.

I remain proud of the work myself and colleagues did in the early days of CFS, and delighted that my colleagues are continuing to research the illness in a broad multi disciplinary way, and refine or develop new treatments. There is still so much to do, and so much to learn. Speaking for myself, and as I said recently in a journal piece (pdf nature neurosciences 2011), I do not think that CFS will be solved in a eureka single moment, but that progress will come, as it does in most of science, from a series of slow incremental steps. I would hazard a guess that the most fruitful area of research will come from a combination of neurosciences and psychology, and will be focussed around the sense of physical effort and effortful cognition, but we shall see. As it is, I don't regret being involved in CFS research, and I think that with all my colleagues we made a very positive contribution to improving patient care. I still see CFS patients to this day, and that keeps me in touch and remains very satisfying.

But there has been a downside. I and others have indeed gone public recently documenting some of the intimidation and threats that we have all received over a long period of time from a very small number of activists. But because I do still stay in contact with sufferers in the clinic, I know for sure that these extremists are a tiny minority, and do not speak for real patients in any shape or form, indeed they do them a major disservice.[20] Likewise, I do not blame those who repeat some of the things that they have read about me, and can understand why they might get angry or upset. Most people do not have the time or the access to check each and every quotation for accuracy or context. [21] I feel however differently towards those who originally extracted or altered the quotes, and persist in doing so over the years despite knowing that these are wrong. [22]
[20] If he's 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 foolishly optimistic 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 'positive' to think that she ever will. I'd have thought she'd be pleased to see an example of such a hopeful social cognition.

I think Wessely will find that rather a lot of real patients hate the impact he has had upon their lives 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 GP's, 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 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] He's 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: It didn't last long though [edit: I've since noticed someone on another website citing the above thread against Wessely - even though the thread itself makes it clear that there's a problem with out of context quotes. As I said earlier, it can be difficult to put the genie back in the bottle]. Out of context quotes are not the primary reason that Wessely is hated by so many 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 can just post whatever they think. It would be a full time job to check the accuracy of every post.

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 all sections of society could self-police and correct any false claims which are made, 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 can 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.

So next time you come across something that purports to be an unfavourable or unflattering quote from myself or one of my colleagues, make sure you check it out first with the actual article. [23] By all means then feel free to disagree that’s fine. Because in the end science proceeds by debate, discussion and disagreement. What it doesn't do is proceed by distortion. [24]
[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. Much CFS research is built upon distortion.

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.... he seems to like being that sort of naff academic who talks about being able to appreciate the 'beauty' of PACE. ["For those who appreciate these things, the trial is a thing of beauty"]

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.


Hi Esther, the Hummingbirds Guide to ME has a CBT/GET database that might help if you wanted to check back on some of the original papers.

I just checked the link but had trouble finding the database. I wonder if its still there? I have an old copy. It might be buried deep in the site, and it does not appear to have a search function. It is a Word document.

Bye, Alex
Dear Simon seems to have got his dates wrong. The media started talking about it in 1982? He must have heard about the Royal Free Hospital epidemic, I don't believe he could have missed it. Perhaps he thinks it was in 1982? (Sarcasm as a counter-argument tool.) The 1934 outbreak in California was also well documented, though I think most of the media response at that time would have been about polio, and the ME outbreak was just atypical polio, no big deal. However some years ago I did find several media comments on the atypical polio outbreak, but I do not have records of this. Most of the media material from that time will never make it to the internet.
All that early stuff is even more ambiguous than CFS is now. Personally, I'm not that interested in the history of CFS, and I doubt that people in 50 years time will look back with much interest in what we think about it now (other than in moral and social terms).
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!
Thanks D. Does anyone think I should add in some links to Wessely papers? A lot need to be read before people can start coming to their own judgements, but I could include some as a starter.
I've reached the max wordcount for a blog, so will add in some papers down here:

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: )

Management of chronic (post-viral) fatigue syndrome:

Wessely Slater speech notes from 1994:


Symptoms of low blood pressure: a population study:

History of postviral fatigue syndrome:


Chapter from a book (the amount available on google seems to vary): provision of negative information"&f=false

There is only one functional somatic syndrome:

Health for me: a sociocultural analysis of healthism in the middle classes:

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