Interview with Professor Simon Wessely | The Times |6 August 2011

August 6, 2011


From The Times, 6 August 2011 (story by Stefanie Marsh)

In an inconspicuous corner of Camberwell sits the most hated doctor in Britain. Simon Wessely is not vilified by his peers — on the contrary, he is one of the most respected psychiatrists working in Britain today. Nor is he loathed by the thousands of patients he has helped to treat throughout his career — only yesterday he received a letter from a patient who told him: “The research you and your team are doing is crucial to me.”

Curiously, most of the people who hate Professor Wessely have never met him. But over the past two decades they have followed his work from afar, mostly over the internet and what has been written, or — sometimes incorrectly — implied, about him in the papers. He is Britain’s foremost authority on ME, or chronic fatigue syndrome (CFS) as it is also known.

It is quite possible that without his research people struck down by the illness would still be objects of ridicule, regarded as victims of some sort of self-imposed dosser’s depression. For it was his research that proved ME was not, as the general public, many doctors and certainly all employers once imagined, “yuppie flu”.

He has written more than 600 research papers on the condition. With colleagues at the psychiatric unit at King’s College London, he helped to develop a rehabilitation strategy and later set up the first NHS programme designed to treat those who had been left incapacitated by the illness. He discovered that by combining cognitive behavioural therapy and light exercise a third of patients make a full recovery.

Before his work, the standard treatment for ME was rest, with the result that many patients were left incapacitated. Many health professionals agree that he has done more for the sufferers of ME than any other individual, not just in Britain but worldwide.

So it is interesting to learn that the people who loathe him — so much that they often send him threatening letters wishing him dead — are themselves incapacitated with ME. The problem seems to lie in the fact that Professor Wessely is a psychiatrist. As far as the extreme ME lobby is concerned, theirs is a purely a physical disease.

Such was the vitriol and the constant ratcheting up of the threats emanating from the fringes that, ten years ago, Professor Wessely chose to give up his research. “I knew that I was the focus for a lot of the aggression. I didn’t think I was helping.”

That is somewhat of an understatement. He now works in military health. “I now go to Iraq and Afhanistan, where I feel a lot safer,” he has said.

Last week the vitriol of the extremists was laid bare for the first time in the press. “They’re not as bad as the animal liberation people,” Professor Wessely tells me. “But they’re just as fanatical. It’s constant stalking, harassment, attempts at intimidation.”

Even now the attacks continue. “If I’m giving a scientific conference they will write to people who are sharing a platform with me to tell them how terrible I am. Or they will send e-mail circulars to my university. You can see on their website that they know the most remarkable details of my personal life. They know most of my diary, I don’t know how but they do. They use — abuse — the Freedom of Information Act. They make frequent complaints to my principal, to my Dean, to regulatory bodies, to ethics committees, to misconduct committees. I mean it’s just a constant litany.”

The first sign that he was on the verge of becoming a hate figure among those he had spent so much of his life trying to cure came in the early 1990s.

“I remember finding a bizarre piece on the internet in which I was accused of stealing a computer from one of the patient groups. It became more organised in the mid-1990s. It’s a very small number of people. I’m accused of calling patients malingerers, neurotic cripples, of throwing boys into swimming pools, stealing things, of plagiarising, misconduct, falsifying data, being in league with Pharma or the lackeys of insurance agencies, stealing money from the MRC [Medical Research Council], abusing my position when I was on the MRC to ensure that my friends get grants, that everything I do is part of a vast conspiracy to deny the truth — all of which are grossly, professionally defamatory.”

If not a little frightening too. “I’ve had people ringing up and say, “We’re gonna get you.” I’ve had death threats. Not many but, you know, you don’t need very many to find them a little bit disturbing.”

Threats and intimidation aren’t things one normally associates with patient lobbying groups. One can hardly imagine contributors to Cancer Research UK threatening to murder leading oncologists. “CFS does live in a very ambiguous territory, somewhere between medicine and psychiatry,” says Professor Wessely. “And that makes sufferers uncomfortable. I think the reason cancer patients clamour for psychological treatments, and they do, is because they are ‘secure’ in their illness identity. So there is no threat to their status or self-esteem. But CFS sufferers are in a different place.”

NHS figures show that a quarter of a million people in the UK have CFS at any one time. And the problem for some is that Professor Wessely is a psychiatrist at all. “I think finally, fundamentally, it is that they cannot stomach the thought that this might be a, quote, ‘psychiatric disorder’. By which they mean — not what I mean — ‘it’s imaginary’, ‘it doesn’t exist’, they are ‘malingerers’.”

Theirs is a debilitating physical disease for which, some insist, there is, as yet, no cure. Certainly, there is no test — a fact that insurance companies in the past have used to their advantage. Even now many insurers won’t cover ME. Should they? “Obviously I’m of the view that we should treat these disorders equally, which is, I think, getting rid of the distinction between neurology and psychiatry.” He said this would partly get rid of the distinction between the “deserving” and “undeserving” ill.

There remains an old-fashioned prejudicial view of what “psychiatric” means. “Psychiatric disorders are disorders of the brain but expressed in a way that you can’t see them. I think that schizophrenia is a psychiatric disorder, Alzheimer’s is a psychiatric disorder, OCD [obsessive compulsive disorder] and autism are psychiatric disorders. Why is Alzheimer’s listed as a psychiatric disorder? Well, largely because it is treated by a psychiatrist.”

But what exactly is ME? A collection of symptoms that has much in common with irritable bowel syndrome, fibromyalgia and post-traumatic stress disorder — afflictions that are little understood. Professor Wessely has identified, in some cases, that hormones play a part and that there can be a physical trigger for ME — glandular fever can be a trigger, though flu cannot — but it is to a large extent still a mysterious condition. There was a theory that ME was a retrovirus but it fell apart when tested. Online, ME sufferers conjecture that they have a virus, an immune problem, or poisoning.

Professor Wessely is dedicated, intelligent and well liked. He is also the kind of doctor who has never tried an “alternative” treatment of any kind himself. His attitude towards alternative medicine may sound cold to those afflicted with ME and desperate for help. It is understandable that some take umbrage at what he has said about the condition, especially if they are wedded to the notion that the illness is purely physical.

He directs me to a research paper which found that patients who were labelled with ME did worse than patients who were told they had post-viral fatigue syndrome. In one of his papers he argues: “Ultimately, a pessimistic illness perception can become a self-fulfilling prophecy of non-recovery.

“This group of CFS patients tends to view their symptoms as part of an overwhelming, mysterious, unexplainable disease that struck them out of the blue and from which they most likely will never recover. These illness expectations are often fuelled by the media, support groups . . . and other sufferers.”

He continues: “Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

A metaphor that does not apparently translate into non-English speaking countries. “ME is virtually unknown in France, Italy and Spain. Only a small number of doctors will make this diagnosis. So most doctors will not call it this. They will call it neurasthenia, they might call it depression, they might call it stress. Now, that might be that they are blind, or it might be that the patients are too poor to seek healthcare. You see, it’s very difficult to know. But it certainly didn’t strike a chord with them in a way that it does over here. When we gave them descriptions of our typical clinical cases here in Britain, they didn’t recognise them. They said, ‘Nah, we haven’t seen that’.”

Does that mean that there are parts of the world where ME does not exist? “Well it does exist but it’s not labelled. In many countries it’s just not labelled as chronic fatigue syndrome . . . Certainly we know that in Italy we do know only a small number of doctors will make this diagnosis.”

What ME categorically is not, says Professor Wessely, is “what you and I get on a bad day”.

Curriculum vitae

Age 54

Educated King Edward VII School, Sheffield; Trinity Hall, Cambridge; University College, Oxford; the London School of Hygiene and Tropical Medicine, University of London

Career Started training in psychiatry at the Maudsley in 1984, was elected to the Academy of Medical Sciences in 1999, and last year became Vice-Dean for Academic Psychiatry Teaching and Training at the Institute of Psychiatry, King’s College London. There he is Professor of Epidemiological and Liaison Psychiatry and head of the Department of Psychological Medicine. He is also Director of the King’s Centre for Military Health Research, honorary consultant psychiatrist at King’s College Hospital and the Maudsley Hospital, and civilian consultant adviser in psychiatry to the Army

29 thoughts on “Interview with Professor Simon Wessely | The Times |6 August 2011”

  1. Ok this really is well beyond the pale now. Something has to be done collectively. Cannot the UK Charities (excluding Action for ME and AYME I would suggest) band together to take out a page in The Times to redress this? This is obscene – it’s all fantasy. Or are we seeing a very public mental breakdown?

  2. Now that Wessely has reduced any disease that has a brain symptom (ignoring those in the other parts of the body) into this new revolutionary category of neurology/psychiatry, which means ever disease out there, we can now stop doing biomedical research into them too.

    Yes! Not one penny from this day forth will be spent on any biomedical research into disease in humans. Great idea, that will save a lot of money. And in ten years time we can then forget about the published literature on those diseases and try to reclassify them psychiatric, we don’t really need that word neurology. Should save the tax payers a bundle.

    Oh but wait a minute the tax payers are the ones with the diseases and they will be getting sick and not paying up. Now where did I go wrong?

  3. The human gamma retrovirus theory has not been disproved. No matter how badly Wessely wishes it had. The man is clearly worried now that is deeds are about to really become public knowledge and the Government will finally have no choice but to deal with him as they should from the start.

    We now have 3 positive HGRV papers, one from 1997. Beat that Mr Wessely.

    PS. Would you consider leaving CFS research, as you are interfering in ME research and we prefer scientists.

  4. The usual Wessely school of thought that will hopefully go the way of many wrong psychiatric views of illnesses in medical history. Unfortunately, Freud’s views are also not condemned enough after all this time either.

    Dangerously wrong here and this highlights why this field of thought needs to be challenged. The blurring of neurology and psychology. Yes , the mind and the body are connected BUT how we study, view, code, recognise/acknowledge and treat an illness must stay distinguishable in order to maintain a true understanding of diseases. Only the insurance industry, welfare and government health care benefits from the blurring of the lines.

  5. Well at least now he has confirmed that ‘death threats’ have been received and that those examples of emails read on the radio and appended to the BMJ hard copy were not ‘death threats’.

    Of course the simple fact that he never said anything about ‘death threats’ on those radio interviews – didn’t stop his being ridiculed on the internet forums.

    It was Dr Crawley who felt one email she read out was a ‘death threat’ and not Prof. Wessely.

    Anyway…

    One is left wondering just what purpose those whose extremism serves. I suppose they thing themselves as being ‘advocates’ but what have they achieved in all this?

    Very sad really.

    1. Wessely has claimed to have death threats. There is no proof that this has occurred.

      Please name an extremist or I will have to take it you have no proof either.

    2. It is Wessely’s version of science that is ridiculed and his claims of harassment, or was that the media again doing it for him?

    3. I also would say you are quick to point out that in his radio interviews he didn’t mention directly the death threats. What people on the internet were also critcising, and fairly, was his outrageous statement that he feels safer in Iraq.

      Fire, i find you are quick to critcise various comments by people on the internet in response to this week’s biased media blitz, and yet are unwilling to pick the many holes in Wessley’s theories and his presentation of them. As someone pointed out, he showed the journalist his bit of research where he says CBT, GET helped a third, he was careful to not show her the research by Twisk and Maes which showed that CBT is ineffective and GET makes a majority worse.

      I feel uncomfortable and if I’m honest offended by you repeatedly criticising legitimate comments on the internet and forums. I do not, and as many others have on here, condone death threats and personal harrassment of Wessley, but I think you show no empathy for why people are so frustrated and at times are pushed to anger. Anger isn’t helpful, but i understand truly why people are pushed into it, myself included.

      This week’s media blitz is what is sad.

      As to the article, breathtaking in the inaccuracies contained within it. A terrible piece of journalism by Stefanie Marsh.

  6. His memory is fading. We first thwarted him in the late 1980s when he tried to become consultant psycho to the MEA. Because of his previous papers the membership rose up with resounding vote of “No Way!”

    Perhaps he can be credited with the term chronic fatigue syndrome.

  7. Oh please… rolls eyes.

    did that journalist not think to consider why a person who is supposedly afraid of coming to harm (daily) from extremists, is clearly very happy to have his smug smiling face splashed across a national newspaper?

    Also just because someone says “I’ve been accused of XYZ” doesnt mean they didnt do it. Why have none of these journalists checked out with anyone other than simon, whether any of those accusations are well founded? People who have done wrong regularly deny it and moan because theyve been “accused of it”, doesnt mean they are necessarily innocent. does it?

    And finally, the prof’s hypothesis (which is all it is when other evidence throws so much doubt on your ideas) that patients are mistaking normal physical sensation for the sensation of illness. To tell someone the equivalent of “no you dont feel ill, you feel what everybody feels, its just that you are misinterpreting it. (as if a competent individual cannot tell the difference!)

    To say that IS saying they are imagining it!!! – it’s saying that they are imagining/deluded that the normal sensation they are experiencing is not normal.

    So stop being so ruddy disingenuous Simon, you are just playing with words in order to appear to be saying something more ‘palatable’. Just tell your truth and stand by it.

    I have felt what it feels like to be sedentary and then embark on major exercise. I had surgery once and was off my feet for 3mnths… when i tried to go back to my physically demanding job it was like being hit by a bus and i had to build up gradually- i was exhausted and my limbs ached like hell – but i did not feel *ill*, i didn’t seek medical assistance because i knew the sensation to be normal if unpleasant. The physical sensations that i experience now are ENTIRELY different.

    I have also been in terrifying and dangerous situations- i know well what the physical sensations that accompany anxiety and stress are. – again what i experience now is entirely different but my experience is irrelevant to you because you’ve already decided what my body feels like to you.

    Do you honestly think that a competent intellingent person cannot tell the difference between the experience of being ill and that of being tired?
    And so by telling me that i am simply misinterpreting what i know to be abnormal sensation (being 40yrs old!) you are asking me to deny my own experience and take on yr fantasy reality that what i experience is what everyone experiences after deconditioning. – that is abuse. full stop. wiping out another persons reality and replacing it with your own is abuse and to do it from a position of power… is shameful.

    And you are responsible for training many so called therapists to do the same, thats why people dont like you dear.
    Because your need to be right is wiping out and over-riding other human beings. It’s abuse, full stop.

    ps i said “so called” therapists, because imo no self respecting human therapist would find it acceptable to override the experiences and reality of another and attempt to supplant it with their own whilst labelling those who do not want to take on the false reality of another as being “difficult/unwilling/unmotivated or wanting the secondary gain that keeping their reality brings”. That is just simply ‘not ok’, and is an indicator of emotional unhealthiness.

  8. Here’s Simon Wessely in full spate: perhaps he does not come across quite as well as his complacently self-satisfied demeanor might imply.

    http://www.medicalcareers.nhs.uk/specialty_pages/psychiatry_information/a_career_in_psychiatry.aspx

    I have no idea why the Murdoch press, decimated as it is by arrests for its news gathering activities, has decided to deploy what remains of its shock troups in open warfare against ME sufferers and in defence of their new hero, the saintly Simon Wessely.

    What I can say is that someone who has cut himself off from the norms of medical orthodoxy with its reliance on the scientific method and supported by all the tools that modern scientific medicine has to offer is not best placed to interpret correctly the manifestions of a new disease when it presents itself.

    As for the Times, I think we can all be grateful to Murdoch for assembling some of the most odious practitioners of the journalistic trade and then erecting a pay barrier around them. Good work, Rupert.

  9. For a man who has been retired for 10 years from this field, Prof. Simon Wessely remains very vocal. Why ?
    Only in his own mind (and those of lazy, ill-informed journalists) is He “Britain’s foremost authority on ME, or chronic fatigue syndrome (CFS)”. This is bizarre.

    Having penned this latest parody, Stephanie Marsh’s name must now be added to the long list of journalists who have been completely taken in by Wessely and who have failed in their basic journalistic duty to check his twisted psychiatric nonsense against the biomedical facts.

  10. @Homegirl well said.
    @Firestorm once again your defence of SW is astounding in such circumstances

  11. It is difficult not to mention Simon in this article, when it is all about Simon, and almost impossible to disagree with him as this is seen as a torrent of abuse or threatening.
    No his research is not crucial to me, because his theories and research happens to stand in the way or seeks to undermine the work of others who are investigating ME as a real and not psychological disease.
    It seems that his peers love him and all agree with him. They pronounce he is a well respected expert because they happen to have a lot to lose if he is no longer in charge. Having bought into his ideas wholeheartedly they risk their reputations and possible funding if he is proved wrong.
    Many other health practitioners will disagree with the statement that he has done more for ME patients than anyone else in the world. People such as Malcom Hooper the countess of mar etc, many people and others know the real story. He has damaged lives and brought ME and those who suffer from it nothing but trouble and grief.
    Manipulation and back track tactics seems to be Simon’s game. When ME was no longer seen as yuppie flue he came out to say he had managed to get rid of the misnomer by himself. No doubt if his theories about ME fall apart tomorrow he will switch sides again, this time claiming that he fought to have ME recognised as a physical disease all along, caused by a virus. Simon would claim to have invented penicillin after trying to discredit it. Unfortunately people who are impressed by him will not see the mess of his previous interventions. Actions speak louder than words and Simon’s past actions are all well documented.
    I feel Simon wessely also seeks to blur the boundaries of medicine and psychiatry. With cancer patients he is not standing in the way of their medical treatment, Chemotherapy, Radiotherapy biological research, or a cure. They are not being pushed into management therapies put forward and supported by Simon Wessely such as Cognitive Behaviour Therapy or Graded exercise to the exclusion of all else. If they were being denied treatment and given only psychiatric based therapies in the same way as ME patients they would be protesting outside parliament. They are not being locked up in psychiatric wards for believing they are ill.
    If ME is called neurasthenia in Spain then it is being diagnosed as something else. It does not mean that ME is not in those countries. The separate outbreaks of Aids were also not linked together as the same outbreak until later. It was not initially recognised as the same worldwide problem, the same disease in India as the one in Africa and many different countries around the world.

  12. Well Mr Wessely can feel very pleased that thanks to this nonsense no member of the public Is going to donate much needed research money for an illness that apparently is a UK cultural phenomenon and called stress in other countries.
    How’s that for advancing the research he was supposed to be so worried about.

  13. The hyperbole and sycophancy of the media – with no less than four articles in the Times alone this last week – in relation to Simon Wessely is astonishing. Stefanie Marsh has failed as a journalist if she actually believes what she has written to be fact: there are so many inaccuracies in her article I wouldn’t know where to begin.

    Still, when Simon says ‘CFS is not simply an illness, but a cultural phenomenon’ he is correct – he describes very well the startling phenomenon of a small group of UK psychiatrists hijacking the neurological illness ME, and redefining it as ‘chronic fatigue syndrome’, a process we have witnessed over the past 20 years. CFS – a nebulous, much less disabling syndrome – bears little resemblance to ME, but Simon has excelled at conflating them and confusing gullible media.

    This parade of bias and ignorance has only confirmed the silly season is upon us. The frighteningly silly season. I do wonder what motivates a consultant psychiatrist to continue to play with people’s lives like this. His behaviour is indefensible. And I don’t honestly think a ‘world expert on ME’ would need puffing up in the press four or five times in one week, if he had the credibility and credentials he claims to have.

    I also wonder what the many biomedical researchers worldwide who *are* actually helping advance understanding of this neuroimmune illness think of his continuing grossly inflated claims. I imagine they are shaking their heads and silently weeping, along with hundreds of thousands of patients.

    A pity that Simon, when he was showing off *his* 600 papers, hadn’t directed Stefanie to the recent paper in the Internal Journal of Medicine: ‘International Consensus Criteria for ME’, highlighting the need for the label CFS to be banished from the field of ME research and diagnosis.

    Science is winning, and it *will* win the ME fight – and to those of us who know the reality of ME, Simon Wessely has made a rather big fool of himself with last week’s extravaganza.

    1. News Corp funds the Science Media Centre where Simon Wessely is an advisor. That will explains some of this.

  14. There have still been no arrests and certainly no charges yet. This is not the first time Wessely has complained about alleged death threats. Wessely obviously has a problem with perception given his theories and his supposed fear of some advocates- he’d apparently feel safer in Iraq and Afghanistan-an outrageous statement.

  15. This article is so absurd it really is almost laughable. But then you remember that people will read it and believe it and then it really hits home.

    I agree with nmj, what do other researchers make of this? Will any of them write in response to this article? There are so many wonderful researchers and spokespeople, so why can one man dominate media coverage in this way?

    We have a friend over who is Australian so I went on the main state-based Australian ME group website. Under treatments they don’t even mention CBT/GET, there’s just a really good piece on Pacing.

    ‘He has done more for the sufferers of ME than any other individual, not just in Britain but worldwide’, doesn’t look like the Aussies would agree.

    I’m also astounded by his comment that ME is virtually unknown in France, Italy and Spain. I don’t speak any of their three languages but I’ve found an ME/CFS site for France which is country wide. Does anyone know anything about this or have any experience of ME in those countries. It seems such a huge claim from ‘Britain’s foremost authority on ME’.

  16. This is the line in the story that I find so very disturbing:

    “He is Britain’s foremost authority on ME, or chronic fatigue syndrome (CFS) as it is also known.”

    I suppose I am much better off as while I suffer with ME, I don’t live in the country where the guiding light for a very real physical illness is someone who is on par with an expert about ghosts and unicorns.”

    “Being an expert in mental illness is like being an expert about ghosts and unicorns.”
    – Dr. Thomas Szasz

  17. lilpink, I agree with you. Let’s fight back.
    I’ve been saying for a long time that we should publicise the ‘real’ research findings to combat the torrent of propaganda from the psycho-lobby.
    Advertising is expensive, but what price truth and freedom from ego-centric vested interests?
    I’ll certainly contribute to an advertising fund.

  18. I submitted this to The Times last night, but I doubt they’ll print it:

    ***
    Dear Editor

    Stefanie Marsh’s interview with Professor Simon Wessely (‘Doctor’s hate mail sent by the people he tried to cure’, 6/8/11) would be almost amusing in its bias and hyperbole, were her inaccuracies not so alarming. I was diagnosed with virally-induced myalgic encephalomyeltis (ME) in 1984 by a consultant neurologist, so it’s fair to say I have an in-depth knowledge of the illness. It’s worth noting I’d never heard of ME – and the label CFS had not yet been coined – when I got ill, but I was transformed from a vibrant, straight ‘A’ undergraduate to a grey and bedridden 20-yr-old. I feel obliged to say that I do not recognise Professor Wessely as ‘Britain’s foremost authority on ME’ and I do not know any ME sufferers – or doctors – who do. I wonder, therefore, if Stefanie Marsh could provide us with a list of these ‘health professionals’ – in the UK and worldwide – who hold Professor Wessely in such high esteem in relation to my illness? She reports with great confidence on Professor Wessely’s credentials and I am genuinely curious to know.

    Yours sincerely,

    Nasim Marie Jafry, author of ‘The State of Me’

    ***

    I do hope they print the 25% Groups’s response though, it’s excellent, linked to on FB.

  19. nmj… fabulous! my sentiments entirely, but written with such characteristic aplomb that it really made me chortle, sure they wont print it – it’s a request for facts, but oh i do wish they would 🙂

  20. @homegirl I wonder if I contacted Stefanie and said, Please, please interview me, I have lovely treats for the Times’ readers, I just remembered that I won the Booker prize for my novel three years ago – would she check the facts or just publish this outrageous lie?! 😉

  21. @nmj LOL, congratulations on yr Booker award, did it come with millions? are you the private donor for the biobank? chortle.

  22. Strange how Simon Wessely feels threatened in the UK by ME patients and needs to work in Afghanistan or Iraq?

    Two well respected cancer specialists in Norway working on ME and Rituximab have not had to flee Norway or work in a war zone, nor are they calling their ME patients as bad or worse than animal rights activists .

    Hardly any ME patients have met these two well respected cancer specialists. Both doctors seem to be doing well and have not stated that they are loathed or abused by there ME patients through the Internet or newspapers or had complaints against them to regulatory bodies, to ethics committees, or to misconduct committees. They are also not claiming ME to be CFS or chronic fatigue syndrome, as being a cultural phenomenon and metaphor for our times. They also do not recommend a psychiatrist, exercise or cognitive behavior therapy as treatment for there patients who are all‘secure’ in their illness identity.

    The work of these two doctors has resulted in the Norwegian directorate for health apologizing to ME patients for their bad treatment. ME patients in Norway are finaly recognized as having a real not psychological disease.
    To see their work go to

    http://phoenixrising.me/archives/6157

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