Simon Wessely in New Scientist

[lansbergen]

I think he's so fond of hearing himself speak that he would continue to do so even while modestly claiming he's officially retired and not involved anymore. I would expect public speaking engagements, written/published vanity musings, and whispering into the ears of government agencies to continue indefinitely.

I think so too

 

[barbc56]

What about the future of his next group of victims? It's not like he's renounced psychobabble, he's just moved onto new diseases, and likely will continue to do so until he retires.

I'm not saying to ignore what is going on now nor what has occured in the past. Far from it. But sometimes focusing only on what has happened in the past, trying to analyze every action and intent in the present, can be an exercise in futility and counterproductive.Sometimes.

Most illness have a treatment component, not necessarily mandated but available that can help someone cope with a chronic illness. That is not the same as saying it's a psychological disorder. It can be very helpful.

However the way these services are seen in relation to the illness gets to the crux of the matter.

How this is carried out, for example in, England is far different than what I'm saying in the above paragraph. I don't live in England, so the impact for me is very different. But it does occur here, just seemingly not as much.

 

[Sean]

The one constant over the decades has been that they mandate that CBT is the cure. They have repeatedly revised their hypothesis of how it is the cure, but they have never budged an inch from it. Even when CBT fails to work, the biggest concession they have ever made is that perhaps earlier CBT, more CBT, or a slightly different form of CBT is the answer.

For whomsoever be afflicted, by whatever means, shall be restored to eternal grace, if only he open fully his heart and accepteth the one and true miracle of healing that is CBT.

Amen

 

[Effi]

I have a queasy feeling that this position buys him a few more years to keep pushing GET and CBT as the "best available treatments". And to continue paying lip service to the idea that he is trying to "help" PWME, and has been the whole time.

I think the BPS group will continue to push CBT as an integrated part of ME treatment regardless of airtight proof of completely biological mechanisms.

Lately, here and there, I've been noticing how the BPS-squad is sneakily trying to weasle their way out of their own GET/CBT story, without having to admit they're wrong. They're starting to promote GET as 'gentle movement', like tai chi and qi gong. As our wastebasket harbours a lot of fatigued people (not just ME/CFS/SEID), they will probably gain some time with this approach. My guess is they'll slowly change their target and finally cling onto the patients left in our wastebasket after definite biomedical proof of ME is established.

@barbc56 I do agree that looking at the negative things in the past can be too energy consuming for us. But at the same time I strongly feel like we have an opportunity here to save future patients from experiencing the same harm that was done to us. I experienced the malpractices of BPS for myself and it is inhumane. It made me sicker than I maybe needed to be. That is malpractice in my book. The way they (mis)treat patients, in such an incredibly patronizing manner, is not something we can let them get away with any longer.

 

[Hutan]

It seems to me this whole saga has the makings of a great documentary (or several). Probably not yet, let's wait for the science to become a bit more unassailable. But maybe in a couple of years.

It isn't too early to start cultivating relationships with suitable investigative journalists.

 

[msf]

I think the least we can do is impugn his professional reputation, so he has less influence on diseases such as ME in the future.

 

[alex3619]

What about the future of his next group of victims? It's not like he's renounced psychobabble, he's just moved onto new diseases, and likely will continue to do so until he retires.

As others have pointed out, there is no renunciation of CBT/GET for even ME or CFS. The comment has a different focus.

 

[alex3619]

It seems to me nothing but a fairytale that Wessely will ever be held "accountable" for anything.

Quite likely. The real issue is changing the underlying problem, and until the entirety of the medical profession, and especially psychiatry, acknowledges and starts dealing with issues then nothing is going to change. Doctors are typically protected from all sorts of service related issues by the laws in their respective countries. Its very hard to do anything about it.

 

[Scarecrow]

I'm afraid that Wessely has already carefully repositioned his involvement. He's thoughtfully given an account on his own website, which some might say is a bit economical with the truth.

But what a nice guy. I'm so grateful that he has taken us seriously. The point is he was - and still is - wrong, wrong, wrong.

Sorry for the wall of text. I wasn't able to break up the numbered points.

http://www.simonwessely.com/index.php/cfs-personal-story/

CHRONIC FATIGUE SYNDROME: A PERSONAL ACCOUNT

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 weren’t 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 couldn’t 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.

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.

Sometimes 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.

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 didn’t 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.

So what contribution did I and my colleagues make?

1. We set up the first proper epidemiological studies in this country.
2. 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 didn’t 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.
3. 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 weren’t depressed anyway. And then once I moved down to King’s, 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.
4. 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
5. That in 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.
6. 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. Back then, another big theory around was that CFS was due to hyperventilation. We linked up with our chest physicians, and showed that it wasn’t.
8. 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. 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. 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. 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. And we did psychological studies as well. 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.
13. 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.
14. Then in 1991 I got a consultant/senior lecturer post at King’s 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.
15. 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.

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 Master’s 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 set 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 King’s 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. 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.

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 King’s and the Maudsley (an awesome legacy to follow) and the largest medical postgraduate training scheme in the world.

CONCLUSION
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. 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. 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.

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. 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.

 

[Sean]

It seems to me this whole saga has the makings of a great documentary (or several). Probably not yet, let's wait for the science to become a bit more unassailable. But maybe in a couple of years.

Keep notes, and bide your time.

 

[Effi]

thanks for the link @Scarecrow

I took a little ride on the wayback machine, just to check if he has changed his story a lot. So I clicked on the oldes possible archived link (2010) en THIS came out: http://web.archive.org/web/20100204200506/http://simonwessely.com/

This website is dedicated to reversing the enormous harm done to sufferers of cronic illnesses that have been marginalised by the work of Professor Simon Wessely of Kings Collage London and others like him who together have come to be known as "THE WESSELY SCHOOL".
Below you will find a few quotes, which may be informative and will allow you to see that the Wessely school are simply wrong:

I wonder how much he payed to buy this domain name.

 

[MeSci]

I think the very least the ME community should ask for from Wessely is an apology/an admission that his theories caused a lot of suffering with some very bad science.

If I cared about knighthoods I would suggest we ask for it to be rescinded too.

It has been tried on numerous petition sites - soon after the knighthood was bestowed. There was a huge number of signatories. Some of the comments were a bit strong, although most were very restrained and reasonable, often heartfelt and even tragic.

Wessely demanded for at least one of the sites to be taken down, with some success.

There is discussion about the issue here among other places.

 

[Indigophoton]

Wessley: 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.

Eh?

Fair enough to have a hypothesis, but when it's shown to be wildly wrong then a true scientist goes with the evidence, not the idea. Perhaps he'll update his website now...

 

[SOC]

I may be a pessimist, but people in authority have been abusing others all throughout history, and gotten away with it, too. This is not going to change.i It seems to me nothing but a fairytale that Wessely will ever be held "accountable" for anything.

That may (or may not) be true, but if we don't even try, it's a certainty he won't be held accountable. If we try to have him held accountable, at least there's a possibility of success. No point in defeating ourselves by giving up before we've even begun.

I don't really expect there to be any legal accountability. There's no law against being a.... er... what he's doing. What I think may be possible is to sufficiently damn him (using his own words) in public opinion that his influence will be greatly diminished and other doctors, political figures, and organizations will not want to be associated with him -- whether they agree with his beliefs or not.

I'm thinking about Nobel Laureate Tim Hunt and his "The trouble with girls in the lab...." debacle. He lost his position with University College London and, I imagine, his income stream from speaking engagements over it. He's become a laughingstock.

 

[Snowdrop]

Very long post.
This is a letter from SW in 1993 that effectively shows what SW thinks of ME (that it is a mental illness with biological abnormalities not unlike schizophrenia). His position has not changed he has merely (as he stated) become better at writing (meaning he is more disingenuous about how he says what he means). Here's the letter:
Dear Dr Aylward,


You may recall that we corresponded last year over the ever controversial subject of chronic

fatigue syndrome, or ME as it is sometimes known. I wrote to express some dissatisfaction at the

then DLA entry, feeling it did not adequately reflect medical knowledge on the subject. I’m afraid

I feel obliged to write again following the receipt of the enclosed leaflet from the ME Association

which triumphantly states that CFS/ME will now be listed under “Other Neurological Disorders”


I regret to say that it seems to me that in order to be fair to the ME Association you have now

gone to the other extreme. I am disturbed that this disorder should be listed as a neurological

disease. I enclosed an editorial that I had written last year for a neurological journal reviewing the

evidence on this subject, and concluding that there was little to point to a neurological origin of

symptoms. Since then, more research has been published in the leading neurological journals and

nothing has happened to change those conclusion.


Instead, I feel this decision represents the triumph of an effective lobby over scientific evidence. If

CFS/ME is to listed as a neurological disorder, I for one will begin to campaign via the mental

health charities for schizophrenia and manic depression to be listed under the same heading.

Indeed there is far more evidence suggesting that these disorders have a neurological origin than

does CFS/ME.


Letter from Simon Wessely dated 06/10/93

My highlight of the naughty bit.

Now. . .2013 A journalist writes an article in defence of SW by interviewing him regarding ME:

This man faced death threats and abuse. His crime? He suggested that ME was a mental illness

Leading scientists such as Sir Simon Wessely, below, are facing a sustained terror campaign — just for researching the causes of ME

Michael Hanlon Published: 5 May 2013

Full article

http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece

No need to take any quotes out of context.

And there is so much more that I have off-loaded from the net onto a hard drive. All the same drivel.

And let's not forget, even though not tied to ME, all those poor people in Camelford who were poisoned by aluminium. SW wrote a nice article that stated they were hysterical. Hard to take that out of context too. The article also still exists---offline.

 

[Sasha]

Just seen a great title of an article on the idea of secondary gains from a 'sickness role' (a favourite theme of Wessely's) in the New Statesman (courtesy of the MEA): "Memo to David Cameron: I have all the incentives I need to stop being ill. It's called "being ill".

Tagline: "Disease isn’t like a gas meter. It has no notion of economics. It doesn’t switch off because you’ve stopped putting money in."

Superb article, by the way - short, devastatingly well-argued and very, very funny.

Edit: written by a PWME, according to a comment on MEA FB. Well done, that woman!

 

[Sasha]

Cort has written about Wessely's change of tune:

http://www.cortjohnson.org/forums/t...-cbt-icon-calls-for-big-rituximab-trial.2727/

 

[redaxe]

I may be a pessimist, but people in authority have been abusing others all throughout history, and gotten away with it, too. This is not going to change. It seems to me nothing but a fairytale that Wessely will ever be held "accountable" for anything.

This is the unfortunate reality. For Wessely his 'work' on CFS/ME and wrapping it in psychobabble is his 'career' and serves his ego. He's probably near retirement age anyway and doesn't have to worry about future grants or career decisions.

But what he did was pretty typical of the way medicine worked in the early 20th century. Freud started the whole psychoanalysis approach and from there it grossly overstepped its boundaries. The best we can hope for is that Wessley's work will be ignored and we can get more publicity on these Norwegian trials.

 

[adreno]

In any case, what could he be held accountable for? Deliberately causing patients harm? No, at worst he could be deemed scientifically wrong, and this has happened to many researchers before. Freud is still revered by many.

Even when all the biomedical details of ME are laid bare, he will still not be officially remembered as a monster who tried to stop progress, but as an important ME researcher who exhausted several avenues of research, and provided some of the stepping stones that modern models of ME are built on today (or in the future).

 

[Scarecrow]

This is a letter from SW in 1993 that effectively shows what SW thinks of ME (that it is a mental illness with biological abnormalities not unlike schizophrenia).

The saddest part about that for me is not that he views ME as a mental illness - he's just wrong - but it made me wonder if CBT gets used much for people with serious mental disorders such as schizophrenia and bipolar disorder.

So I had a very quick look - http://www.bbc.co.uk/news/health-25574773. They (not necessarily Wessely) believe that CBT tackles the underlying cause of schizophrenia. Which is interesting, because the single biggest risk factor appears to be genetic. Psychological factors get thrown in the mix of course but, basically, it's not known what caused schizophrenia. More evidence of deluded psychiatrists?