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Wesselys Words Revisited

Discussion in 'General ME/CFS News' started by dasiymay, Jul 30, 2011.

  1. dasiymay

    dasiymay Senior Member

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    Wesselys Words Revisited

    Malcolm Hooper 30th July 2011

    with acknowledgement to members of the ME community

    Tom Feildens notably excited introduction to his interview with Professor Simon Wessely about the disorder ME on the BBCs Today programme on 29th July 2011 exemplified a failure to exercise the requisite journalistic neutrality when reporting a story (http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm).

    Feilden seemed excessively eager to inform the nation about Wesselys claims of how he, a genuine scientist, is harassed and threatened by patients with ME to the extent that his mail has to be routinely scanned before he is allowed to access it and how he needs police protection as he has received death threats.

    A dramatic and disturbing story by Wessely, but is it true or is it, as some people believe, an attempt to denigrate sick people and direct attention away from the ever-growing body of biomedical evidence which invalidates his own now-disproven beliefs about the disorder?

    When challenged in the past to provide actual evidence corroborated by the police -- of such threats to his life, did Wessely produce any evidence? The police take death threats seriously so each would be allocated a crime incident number. Have any of these alleged death threats been substantiated? Have there ever been any prosecutions and have they ever been reported in the press?

    What must Wesselys protection cost the nation in the currently straightened economic climate, and do a few immoderate emails and postings on the internet by desperate patients pushed to the brink by Wesselys consistent denial of the very existence of the disease from which they suffer warrant such costly protection?

    As for the threats allegedly suffered by Professor Myra McClure and Dr Esther Crawley, it seems they may be a matter of interpretation. Quite certainly, it is known that Professor McClure has dealt with a correspondents valid concerns about her work by sending a receipt six weeks later which said Your message was deleted without being read (http://tinyurl.com/3pftbtl) and Dr Crawley has admitted that she has not received explicit death threats but has interpreted one email in particular to constitute a death threat (http://www.bbc.co.uk/iplayer/console/b012nlcv).

    Feilden seemed unaware that claiming vilification and abuse by ME patients is a regular pattern of behaviour exhibited by Wessely over the years, usually when yet more published evidence further disproves his belief that ME is perpetuated by patients wrongly attributing their symptoms to a physical disease. At such times, Wessely often appears to deflect media attention away from the emerging biomedical science by portraying himself as the victim of endless harassment from vicious and intimidating ME patients.

    Is such behaviour not one of the tactics of denial used by deniers and revisionists of whatever discipline? It is common practice for deniers to claim that pressure groups are active against them and are attacking both them and the truth and to claim that there are orchestrated campaigns against them (The Mental Health Movement: Persecution of Patients? Background Briefing for the House of Commons Select Health Committee. Professor M. Hooper; December 2003: http://www.meactionuk.org.uk/Select_CTTEE_FINAL_VERSION.htm).

    Can it be co-incidence that this latest well-orchestrated campaign of media coverage of the alleged threats to Wessely and his colleagues who share his views about ME has been mounted hard on the heels of the publication by Carruthers et al of the International Consensus Criteria for diagnosing ME compiled by 26 researchers and clinicians from 13 countries (Journal of Internal Medicine; Accepted Article: doi:10.1111/j.1365-2796.2011.02428.x)?

    The sound biomedical evidence upon which those criteria are based completely vitiates the belief of Wessely and colleagues about the psychiatric nature of ME, so what does he do?

    He once again claims he is being vilified and threatened by patients with ME and he publicly denigrates and attacks them by asserting that they would rather have a disease caused by a retrovirus than admit they suffer from a mental disorder.

    There are many who hold that it is Wessely et al who are orchestrating a media campaign against patients with ME, not the other way round.

    The campaign to eradicate ME by Wessely et al cannot be denied and the documented referenced evidence can be accessed at http://www.meactionuk.org.uk

    In 1990 Wessely asserted that ME exists only because well-meaning doctors have not learnt to deal effectively with suggestible patients (Psychological Medicine 1990:20:35-53).

    In 1991, he cited medical comments made between 1880 and 1908 on patients with neurasthenia, with the very clear implication that such descriptions apply equally well to todays ME patients: always ailing, seldom ill; a useless, noxious element of society; purely mental cases; laziness, weakness of mind and supersensitiveness characterises them all; the terror of the busy physician (BMB 1991:47:4:919-941).

    His dismissal and rejection of the biomedical evidence on ME has continued unabated.

    On 6th October 2003 in her regular column Doctors Notes, Dr Margaret Cook, former wife of the late Robin Cook MP, wrote an article about Simon Wessely in The Scotsman entitled ME sufferers have found an enemy in Wessely so they need friends, commenting: It seems that he has been central to the psychiatric perspective that ME does not exist at all, and that the related Chronic Fatigue Syndrome is a mental condition best managed by a psychiatric therapeutic approach.He has downplayed the need for research into diagnostic markersand such is his influence that no state funding is forthcoming to support any other research than his own.You can tellthat he is used to dictating principles and having everyone in his orbit humbly accept his gospelWhen you have enemies like him, you need a powerful lot of friends.

    Wessely was both hurt and angry by that article and he demanded its retraction and an apology from The Scotsman, which meekly complied and as a result of his threats of litigation duly dispensed with the services of Dr Cook as a columnist.

    Of note in relation to Feildens broadcast is that in Wesselys reply to Dr Cook published in The Scotsman, he stated he had spent 15 years of his life looking after sufferers from ME.

    That does not chime with the fact that for the most part he has denied the very existence of ME how many other caring doctors have amused themselves by orchestrating a campaign in the BMJ about non-diseases and proposed that ME be one of those non-diseases, along with freckles and big ears, as happened in 2002?

    Patients with ME know what Wessely really thinks about them, as his published views leave no room for doubt or conjecture (for illustrations of his descriptions of ME/CFS patients, see Quotable Quotes about ME/CFS: http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf).

    Later in October 2003, Wessely asserted that those who disagree with him and believe that ME is an organic disorder -- to whom he referred as the radicals -- are (quote) crazy and that they are engaged in fantasies, lies and gross distortions, that the radicals are left fighting yesterdays battles (seemingly because he believes he has established that ME does not exist except as a false belief), that they need a reality check and their behaviour is outrageous (private communication).

    Those words hardly concur with his claims to be a caring clinician who has looked after people with ME all his professional life.

    Responding to Wesselys claims of vilification and denigration by patients with ME that he made seven years ago, in his letter of 7th January 2004 to The Scotsman, Dr John Greensmith pointed out: It is deplorable if he has been so treated, no matter how controversial his views. It is instructive, however, to examine how Professor Wessely has raised passions to this level of fervour by, perhaps, more than any other single individual, being responsible for making the area as controversial as it is.

    Referring to Wesselys use of the term battleground, in a letter of 9th January 2004 to The Scotsman, DM Jones pointed out: It is astonishing that he seemingly is blind to the fact that that this situation has arisen almost entirely due to his own prolific output and that of his like-minded collaborators, denying the existence of ME on the one hand and reclassifying (his) preferred term CFS as a mental and behavioural disorder in the WHO Guide to Mental Health in Primary Care on the other.Professor Wessely should be held accountable for his own role in this controversy over CFS/ME, which provides the basis for this battleground and which has had such disastrous consequences for so many patients.

    Importantly, as Erik Johnson noted, Wessely has stated: Right from the start, ME has been identified with a refusal to accept the doctors verdict (Co-Cure EDU: 9th January 2004). Johnson drew attention to the dictum of Sir William Osler: Listen to the patient. He is telling you his diagnosis, commenting that Wesselys name threatens to stand as the epitome of physicians who refuse to listen to their patients.

    In another letter of 9th January 2004 to The Scotsman, Dr Joseph Lenz, a clinical psychologist, hit the nail on the head: Science has no greater enemies that those who seek to confuse an issue, and those who create the most confusion are invariably those who believe that they already know the truth (Co-Cure EDU: 10th January 2004).

    This being so, can or should -- one take at face value what Wessely says?

    One moment Wessely states, as he did on 12th May 1994 in his 9th Eliot Slater Memorial Lecture: I will argue that ME is simply a belief, the belief that one has an illness called ME but ten years later he states, as he did in his article in the Scotsman on 5th January 2004: I have been saying for 15 years that this is a real illness.

    Clearly both statements cannot be true.

    Presently, Wessely has seized the opportunity to weave the theme of his alleged personal harassment into his responses in the current issue of Nature Reviews Neuroscience published online on 27th July 2011 (Viewpoint: Chronic fatigue syndrome: understanding a complex illness: doi:10.1038/nrn3087): in answer to the question What is the best way for the field to make progress?, his answer was: So long as decent clinical and basic scientists continue to engage with the field it will make progress, although sadly that no longer includes myself.The ongoing antagonism that has been directed towards so many of the scientists who failed to replicate the original (XMRV) finding and who thus came up with what the extremists see as the wrong answer has alienated yet another group of scientists from getting involved in this area.

    What Wessely and the media fail to acknowledge is that it was the utterly triumphant and contemptuous comments of certain of those scientists whose studies failed to replicate the original XMRV study published in Science (2009:326:585-589) that so incensed some people with ME, many of whom have daily to run the gamut of undisguised disdain amounting to abuse meted out by those who are supposed to be supporting and helping them cope with a devastating disease.

    In the interests of common justice, Tom Feilden would do well to investigate the reasons why people with ME are so angry by checking the easily verifiable facts and then to redress the balance by reporting with equal enthusiasm the other side of the battleground because, compared with Wesselys 25-year campaign of dismissal and denigration of extremely sick people that has resulted in no appropriate healthcare provision and in the relentless harassment by the DWP of people with ME, there may be those who consider that, whilst abusive emails and death threats are never in any circumstances to be condoned, complaints to the GMC are entirely understandable and legitimate.

    Permission to repost
  2. Enid

    Enid Senior Member

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    Can't tell you how good it is to see this dasiymay - many thanks and to Prof Hooper for clarifying the whole (much doubted and inflammatory) claims by those concerned.

    (Bound to wonder to be blunt about his own state of mind in - denial).
  3. max

    max *****

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    anyone know Wessely's email so we can forward a copy? :angel:

    When does this make it onto the BBC R4 Today programme or the Daily Mail or the Telegraph or BBC News 24 any of the other mainstream media?

    Oh ...... its just on ME forums ..... ah well.
  4. dasiymay

    dasiymay Senior Member

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    No it has been sent to the Today programme.
  5. Enid

    Enid Senior Member

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    That is good to hear - the programme was so biased I couldn't listen. Thanks for keeping us in touch with everything dasiymay.
  6. max

    max *****

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    who will read it at the Today office?
  7. max

    max *****

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    sorry Daisymay, I too like the way Hooper debunks the Wessely - I wasn't being disrespectful to you or Prof Hooper.

    I don't need Prof Hoopers response on this, neither does anyone else on the forum - unless this is played out in full on radio 4, News 24 etc, then what good does it do?
  8. Bob

    Bob

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    Wow.

    Powerful letter.

    I love Malcolm Hooper, and Margaret Williams, and I believe that the letter is totally justified.

    However, I couldn't help thinking that it does somewhat justify the BBC's headline "'Torrent of abuse" from ME patients, doesn't it?

    I really hope that the BBC take up this story, and carry out some proper investigative journalism, now that they've opened this can of worms!

    Hooper makes some excellent points.


    If Wessely doesn't understand why he offends patients so much, after 20 years of treating them, then he obviously never listens to his patients, which means that he can't be a very good doctor. So you'd think that the BBC might want to get some more insight into this situation, before they broadcast the interview!
  9. Tulip

    Tulip Guest

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    Prof Hooper is the best :D

    Simon Wessely would NOT pass a psych assesment..he clearly has something really wrong going on in that mind of his, apart from being a pathological liar!.
  10. Enid

    Enid Senior Member

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    I don't really see a torrent of "abuse" Bob - but well over ten years of constructive criticism including scientists/professionals/researchers. W et al choose to place the emotive term "abuse" on the lot and place it all on the backs of misguided ME patients. (how convenient for them). If I recall correctly from Uni psychology it's called "displacement".
  11. dasiymay

    dasiymay Senior Member

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    Max I quite understand what you are saying and the frustration but let's just wait and see if Today responds. Professor Hoopers articles are sent out to the appropriate institutions, journals, individuals but it is up to them to respond.

    They are also sent out round the world to a wide range of academics, institutions, charities and ME patient forum and lists, so lots of people read what exactly is going on here, not just ME patients.
  12. Bob

    Bob

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    I do agree with you Enid, but Wessely will try to use letters like this to justify his complaints.
    But I guess that we just have to be prepared to put up with that because, like I said earlier, I believe that this letter is totally justified, and a powerful message, and very supportive of the ME community.
    I really hope that the BBC investigates this subject seriously now that they've unleashed this war of words!
  13. Enid

    Enid Senior Member

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    Also Bob - in a way he has personalised it all methinks. It is his "ideas" so much opposed - not based on science but theory - now if he and his ideas are one, he got himself into it. Yes I agree this has a long way to run now. I'm optimistic like you. There is simply too much science (he et al) choose to ignore.
  14. Firestormm

    Firestormm Senior Member

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    I transcribed the interview as referred to in Prof Hooper's opening paragraph and to which he subsequently relates. I can't vouch for its' accuracy of course but it took me over an hour to do so I am pretty confident:

    BBC Extended interview with Tom Fielden and Prof Wessely: http://news.bbc.co.uk/today/hi/today/newsid_9550000/9550947.stm

    BBC Tom Fielden:

    This is a very alarming campaign really of harassment something a small group of academics working on chronic fatigue syndrome or ME and it has included abuse intimidation death threats vilification on internet websites and also a serious of official complaints alleging personal and professional misconduct to universities ethics oversight boards and the General Medical Council but really at its heart it seems to be an objection by some activists to the association of chronic fatigue syndrome with mental illness its characterisation as a psychiatric condition. Now they claim the real cause is biological and want research to focus exclusively on identifying the as yet undiscovered virus responsible one of those targeted is Professor Simon Wessely from kings college London hes received a series of death threats and now has his mail routinely scanned for suspect devices

    Professor Wessely: its a direct intimidation letters emails occasional phone calls and threats but more often indirect intimidation through my employer through the General Medical Council and its something that Im always aware of with everything I do that there are people watching who try and make life difficult

    TF: You say try and make life difficult but it has been pretty spiteful I mean pretty malicious campaign

    SW: Yes yes clearly I think it is maliciously unfair and unjustified and intended to hurt all of it intended to denigrate and you know try and as these campaigns do to try and make you into a kind of a leper so that no one will anything to do with this terrible person. I am pleased to say that it hasnt worked but that doesnt mean that it hasnt had some personal cost.

    TF: And there were some personal threats in there as well havent there?

    SW: Yes there certainly have been. I mean I have never been the target of violence but I have been the target of threats of violence and because of that we have taken security advice and police advice you know we do quite a few of the things that people who work in this institution with animals you know animal research do sensible precautions and we are occasionally briefed on particular threats.

    TF: You talked about a campaign there and I am particularly interested in what you think this is actually all about? What this motivates these attacks?

    SW: I think sadly some of the motivation here comes from people who really do believe that any connection with psychiatry and the world of psychiatry is tantamount to saying there is nothing wrong with you, you are making this up, go away, you are not really ill. Now thats profoundly misguided it fails to understand the whole nature of so many disorders such as you know schizophinia autism bi-polar disorder major depression alzheimers etc. which are psychiatric disorders as classified treated by psychiatrists, but are clearly serious primary brain disorders in all sorts of ways, but they fail to understand that you know the organic nature of the conditions and instead they fall victim to the label and they believe that the mere involvement of of psychiatry denigrates them and denigrates the condition.

    TF: And thats why you get people seem to latch onto the idea that there might be a virus involved and that we just you know we havent found the concrete cause of this disease and people like you and in a big conspiracy to pretend that they are all malingering?

    SW: Yes.. certainly you almost the depths of the passions sometimes when generally people seem to prefer to be diagnosed with like a retrovirus a potentially incurable, maybe even fatal illness rather than an illness for which actually we do have some reasonable but not perfect treatments and that I think really attests to the strength of feeling here. I would rather have an incurable virus than a potentially curable disorder, if the cure or treatment involved any acknowledgment of a social or psychological.

    TF: Id rather have an incurable disease than a mental health problem?

    SW: Well, yes I mean I think that is very sad because I think what it does do is it deprives patients of avenues of management that might be beneficial and I think it is very sad if anyone listening turns their back on treatments that have been validated and been shown to help because of a belief that if I went down that route that would mean I was making all this up.'
  15. Bob

    Bob

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    Great work Firestormm. Thank you.
  16. max

    max *****

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    Yes, very true - but, history has shown that whenever the Wessely speaks, it is reported all over the mainstream media - whenever Hooper et al speaks, it is reported all over the ME patient groups and forums.

    Even when our viewpoint does manage to make it onto the main platforms, it is always linked to 'yuppie flu', tired all of the time, and suggestions that CBT/GET works.

    Other than challenging the Wessely directly, how else can this man be pushed into either making a 'mistake' or, someone in the media being curious enough (and being allowed) to question 'why' we are so 'abusive' toward this character?

    The Wessely must be kept under pressure.
  17. Enid

    Enid Senior Member

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    Wish it were just a case of W -max - but it is the tip an iceberg by the use psychiatry generally in unexplained (yet) illnesses. But yes I agree he et al are responsible for the distortion in ME.
  18. max

    max *****

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    Wessely is the iceberg. It is his voice that has steered psychiatry.

    Wessely depends totally on the 'ignorance' of the public to ensure his authoritive voice. The public ignorance is maintained by the media - if we back down now, and let this off the burner, we lose.
  19. currer

    currer Senior Member

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    We need to make a formal complaint - to the BBC or to the press standards commission. Does anyone know how to go about it?

    This is highly biased reporting. Perhaps the MEA or AfME will do it ? Does anyone have any hope there?

    I cannot believe this will go down well among medical professionals. It is so unprofessional to make these complaints against your patients in such a public way..
  20. Bob

    Bob

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    The BBC has a complaints procedure:
    http://www.bbc.co.uk/complaints/

    Bare in mind that they did also interview Shepherd, to bring a bit of balance to the news item.

    I suggest writing to the Today program, because Radio 4 are usually very receptive to their audience.
    You can contact the Today program, to set the record straight, here:
    http://news.bbc.co.uk/today/hi/contact_today/default.stm
    (Today is the news program where the interviews where broadcast)

    (I think we should try to keep our messages as polite, factual and non-personal as possible, so we don't give the BBC any reason to believe Wessely's negative portrait of the ME community, although I'm struggling to keep my correspondence non-personal myself.)

    I don't know if we would have a legitimate complaint against Wessely to the medical authorities? I can't see anything sticking there.

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