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Simon Wessely on XMRV

Discussion in 'XMRV Research and Replication Studies' started by condra, Nov 11, 2009.

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  1. Mark

    Mark Acting CEO

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    Quick guess that by analogy to suing your GP for malpractice, maybe you would sue for malpractice in terms of policy: the policy-maker having negligently given doctors bad advice contrary to plenty of known science and much protestation. However as with GPs, the defence is probably - deliberately - ridiculously easy: find another professional/doctor as witness who agrees with you and/or would have said/done the exact same thing. In the case of GPs, the law says they only need to find one!!! And even to get started on a case which typically can last 9 years, you have to stump up about 5k for the introductory study assessing whether you might have a case...

    The obvious flaw in this system is that you only need two crap doctors who are mates and they can do whatever they like. But unless I've been misadvised, that's the law!
  2. Levi

    Levi Senior Member

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    It's not that easy in the U.S.

    I don't know about the U.K., medical malpractice is a bit different in the U.S.; while the commonly accepted practices for a particular illness would be some defense, it would not be an absolute defense.

    IMHO, In cases where an M.D. were to diagnose and document a patient as having a primary psychiatric disorder (functional problem), rather than a physical post viral syndrome (organic problem), or even as opposed to a deferred diagnosis (don't know) - that M.D. could be successfully sued in many states for malpractice. Particularly if the treating physician is not a psychiatrist and is practicing outside of the specialty and playing shrink. These cases will be interesting if XMRV pans out as a primary cause of ME/CFS.

  3. catch

    catch Senior Member

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    [Edited again: I guess I'll remove half of this for now? If anyone has a clearer picture of the legal side of this let me know and I'll stick my post back up]

    Well said Mark. Reeves also tried this one on in the latest NY Times article by saying that “no other studies had ever proved a virus to be the cause”. Isn’t it surprising that the XMRV virus hasn’t been “proved to be the cause” of ME/CFS before? Do you think it could have something to do with the fact that XMRV was only discovered in 2006? Or that the NIH, CDC and their counterparts worldwide refused to fund research into biophysical causes? I’m not sure but I think there could be a link there ;).

    Before I heard about Dr Kerr’s major study on XMRV I shared your concern Min. Given his past research I think Kerr will select well defined patients. If XMRV is in UK ME/CFS patients, I think he’ll find it.
  4. Holmsey

    Holmsey Senior Member

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    I also got a reply, to which I replied, five close to instant replies later I realised this isn't another Sir Liam it's a guy who takes people seriously.
    Regarding abuse, I like the fact this guy writes back and frankly I don't care about his spelling. If it's anyone who uses this site who's been threatening his family or suggesting he commit suicide could you stop, before he stops speaking to the rest of us, it's childish and the stress of going to court when they catch up with you isn't going to help your condition.

    Being a Johhny come lately I'm probably not clued up on why so many are against him but for sure that gives me a chance to look at his papers with an open mind. He's sent quite a few and say's he's published over 550, in his words 'They are all open access and free. www.kcl.ac.uk/cfs. And then look for publications'.

    Regarding some of the other posts on this thread, frankly I don't think we need Simon Wesley to tell us that we're probably not all suffering from the same thing and perhaps we should be a little less threatened by that thought.
  5. Alice Band

    Alice Band PWME - ME by Ramsay

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    Holmsley,

    People have been threatening Wessley, his family for years and years and years.

    He never stops commenting on CFS and he doesn't stop sending emails.

    It's up to individual people to decide what action they want to take and how to do it.
  6. Athene

    Athene Never give up

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    A little background for Holmsley

    You mentioned you are relatively new to this illness and don't understand why we get so spectacularly worked up about Mr. Wessley.

    First I want to say, you are completely right in condemning whoever is threatening the man, and I would like to second that.

    However I would like you to know, also, that people in the UK with CFS regularly get sectioned and forcibly administered drugs which alter or damage their mental capacities. Some spend their lives in mental institutions. Once you are in one, and officially sectioned, it is a criminal offence to leave. This happens to many people who have had no blood tests whatsoever to verify if there is a physical explanation for their symptoms. Simon Wessley is the leader of the "psychiatric" lobby which has created this situation.


    ARTICLE FROM NEW SCIENTIST:
    Chronic fatigue syndrome has been given as an official cause of death for the first time in the UK. CFS, which is also known as myalgic encephalomyelitis (ME), has occasionally been recorded on death certificates in the US and Australia but it is far from being accepted as an organic disease.
    ...."People have been reluctant to subscribe to the biological side because of the power of the psychiatric lobby," says Kerr. "Doctors are sceptical about the existence of CFS and there is controversy about its underlying cause."
    The verdict was welcomed by Sophia's mother, Criona Wilson, who had to fight for recognition that her daughter was physically - rather than mentally - ill. Sophia was sectioned for two weeks under the Mental Health Act in 2003.


    DESCRIPTION OF HOW SOPHIA WAS TREATED IN THE LAST FEW WEEKS OF HER LIFE BY THE NHS
    In July the professionals returned - as promised by the psychiatrist. The police smashed the door down and Sophia was forcibly removed and taken to a locked room within a secure ward of the mental hospital. Despite the fact that she was bed-bound, she did not have even basic nursing care; her temperature, pulse and blood pressure (which had been 80/60), were never taken, her bed was never made, she was never washed, her pressure areas were never attended to and her room and bathroom were never cleaned. The nurse asked me to cook for her as the processed hospital food made her more ill. Sophia also had to deal with many nurses constantly going into her room and talking to her.
    The psychiatrist made it quite clear to Sophias solicitor that he would not release Sophia. However, two weeks later, after a tribunal lasting 8 hours, she was released. It was too late; the damage had been done. Sophia relapsed, not to where she had been before, in spring 2003, but to a hell hole to which she had never been. She never recovered from their maltreatment. She never stood a chance.


    FINALLY, READ THIS
    This explains how Wessely has fudged the definition and diagnostic criteria of ME CFS to line his pockets
    http://www.hfme.org/whobenefitsfromcfs.htm

    I hope this helps you understand how old timers like me got so bitter and twisted. I got ME in 1985 before the term CFS had even been invented. In those days we got treated with a little respect and taken seriously - we had a new illness that nobody understood but proper research was being done.
    Then CFS was invented in 1988 and suddenly I was a head case. I never mention to my GP that old diagnosis of ME because I was told in no uncertain terms that I would "make myself unemployable" if it were on my medical records that I had a psychological illness. End of story, end of help. I have had absolutely no help from the NHS since then, no blood tests, no treatment, nothing.

    I have lived for 25 years, my whole adult life, trying to hide from my own doctor how ill I actually am. If that would not be enough to make you angry, then what would?
  7. condra

    condra

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    Hello everyone.

    I today received an email from Simon Wessely, who noted that a quote from his email to me found its way on to the Co Cure website.
    For what it's worth, I am not a member of the Co Cure forum, but will sign up today to try and find the relevant thread.

    He claims that he would have given me permission to publish this email, had I asked for permission, but that I should rectify the situation.

    So, in the interest of covering my behind, I would ask that this thread be locked, or that any Wessely quotes be censored, and indeed people draw their own conclusions.

    Perhaps an official public statement from Professor Wessely is imminent. Either way, the fact that he wants to censor his own comments speaks volumes about the predicament he finds himself in since the WPI breakthrough in Nevada.

    Regarding the threats and aggression that has befallen Simon Wessely over the years. Personally, I don't condone this sort of behavior, and I believe it can only damage our collective reputation. I imagine though, that most of the proponents of this sort of action, are irate, yet harmless folk, who have been given many reasons to see Simon Wessely as an "enemy" of sorts.

    I think it is important to outline the facts in a calm, objective manner, wherever possible. Advocates of the psychiatric argument have dug their heels in for long enough, but they are now on the back foot. Remember what Martin Luther King said: A LIE CANNOT LIVE!

    Don't forget, anyone can email Professor Wessely to ask for comment or push for an official reaction to the WPI findings, which can be published.
    simon.wessely@kcl.ac.uk
    I would urge people to be polite.

    Thanks.
  8. condra

    condra

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    and finally..

    Finally, my response to PSW, which I own copyright to :D

  9. Min

    Min Senior Member

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    Let's not forget the children who have been forcibly removed from their families because of this man's theories. Ean Proctor, one of these, was allegedly thrown into the hospital swimming pool (he sank) and left in his own urine and suffered other mistreatment because the staff thought he was pretending to be paralysed:

    http://www.trans4mind.com/counterpoint/index-health-fitness/walker4.shtml


    "In September 1986, Ean Proctor, an 11 year-old boy living on the Isle of Man, became ill with a flu-like illness from which he did not make the anticipated recovery. Ean began to complain of an overwhelming debility affecting his arms and legs, he felt permanently nauseous, had a vacillating temperature, severe headaches, sweating, mouth ulcers and swollen glands. He began to have difficulty in controlling his speech and developed a mental fatigue which left him struggling to finish a sentence and unable to remember things. By January 1987, with the illness persisting, he had begun to drag one leg and lose his sense of balance. Over the next ten months Ean Proctor attended the Royal Liverpool Children's Hospital, where he was diagnosed with Post Viral Fatigue Syndrome, and the local Noble's Hospital, where it was suggested that he might be suffering from 'school phobia.'

    When the Proctors asked if Ean could be referred to a research Professor on the mainland, they were informed that they would be wasting NHS money. The Proctors offered to pay themselves but were still refused. Eventually, however, it was suggested that the Proctors seek help in London at the National Hospital for Nervous Diseases (NHND). Here Ean was seen by Dr. Morgan-Hughes, a consultant neurologist, who after an hour-long examination diagnosed severe myalgic encephalomyelitis, the illness known by its initials ME.

    The Proctors knew nothing about ME but were glad to have a diagnosis. Morgan-Hughes told them that their son should be cared for at home and that school would be out of the question for the foreseeable future. By the end of 1987, Ean was partially paralysed and had lost his voice; he would be unable to speak again for almost three years. During the first year of coping with Ean's illness, the Proctors learned more about ME from campaigners, independent research and from their consultant.

    All the symptoms which Ean Proctor suffered had previously been recorded as assailing patients who had been diagnosed with ME. In April 1988 Ean and his parents flew again to London for another appointment at the NHND. On this visit the Senior Registrar in Psychiatry, Dr. Simon Wessely, took an interest in Ean's case.

    By 1988, when he first saw Ean Proctor, Dr. Wessely had met up with a number of medical sceptics based in Britain and America. In Britain this informal group officially launched themselves in 1988 as the Campaign Against Health Fraud, later changing their name to HealthWatch. The group was generally in favour of orthodox medicine and pharmaceutical intervention, while opposed to what they considered fashionable but unevidenced illnesses or con-cepts of environmental illness and their 'alternative' treatments. Dr. Wessely's main contribution to this group, over the next six or seven years, was to be his argument that ME was not an organic illness but one which originated in the mind.

    On the day of the Proctor's second visit to the NHND, Dr. Wessely dropped into the consulting room and asked the Proctors if they would help with his research into ME. Even at this early stage, Dr. Wessely, who later suggested that Ean's inability to speak was elective mutism and that he had a 'primary psychological illness', seemed convinced that children did not suffer from ME.

    It became clear to the Proctors that some doctors did not accept ME as a physical illness. Shocked by this conflict among experts, the Proctors told the doctors they could neither afford the time off work nor the money to fly backward and forward to the hospital in London each week. The doctors seemed adamant that unless the Proctors allowed psychiatrists to assess their relationship with Ean he was unlikely to get better. On their return to the Isle of Man, the Proctors dropped a letter in at their GP telling him what had happened and asking him to contact them. Two weeks went by before the GP informed them that he could not accept the original diagnosis of ME. Before anything else was done, he suggested, they should all await a report from Great Ormond Street. Mr. and Mrs. Proctor then sought help from a medical practitioner who was also a homoeopath.

    Unbeknown to the Proctors as they sought their own support and treatments, their local Social Services team was acting upon an assessment prepared by doctors at the NHND and Great Ormond Street for the Proctor's GP. This report included a statement from Dr. Wessely stating his professional opinion that Ean's apparent illness, appeared to be 'out of all proportion to the original cause' and that his parents were 'over-involved in his care.' In a later letter of June 1988, to the principal social worker in Ean's case, Dr. Wessely stated: 'I feel that Ean needs a long period of rehabilitation, part of which will involve very skilled management of separation from his parents.'

    Early in June 1988, social workers on the Isle of Man met with doctors and Child Care Department workers from the Island. Of the two doctors present at this and subsequent meetings, only one had seen Ean. The report from Great Ormond Street Hospital informed the participants that Ean was in a life or death situation and had already suffered serious deterioration. The inference of both the report from Great Ormond Street and the doctors' evidence at the meeting was that Ean's parents were to be blamed for Ean's condition, having imposed 'false illness beliefs' upon him. A decision was taken to obtain a Care Order, which would enable Social Services to take Ean from his parents and place him in the care of the State.

    The following day social workers, with an order from the court and evidence provided by London doctors, accompanied by police officers, called without prior arrangement at the Proctors' home. Under threat of force they took Ean to Noble's Hospital. Watching from their front door as social workers took their sick child, Mr. and Mrs. Proctor had no way of knowing when or under what circumstances they would see him again. "
  10. Marylib

    Marylib Senior Member

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    For Holmsey

    Well, I am hoping these posts help to answer you question about the reaction of the ME/CFS community in the UK regarding Mr. Wessley and the psychiatric model.
  11. Martlet

    Martlet Senior Member

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    Just arrived back from a much-needed vacation in Florida, but had to be driven back to MO because I got really sick at the airport and could not be cleared to fly. This darned illness!!!

    That is by way of explaining why I am so out of the loop, but every time I read about the appalling treatment at the hands of some British physicians, I find myself almost boiling with anger. So much so that today I shot off an email to Dr Wessely, giving him my history (very briefly, I promise) and telling him that as part of the diagnostic work-up, I saw not one but TWO psychiatrists - because my first was reassigned to a USAF base in the States - who both gave me a clean bill of psychiatric health and concurred with my diagnosing internist that what I had was a disease of organic, physical origin.

    I then went on to politely tell him about how friends and acquaintances have been treated in the UK, respectfully suggesting that it was because of his guidance that they were not obtaining proper treatment and asking if he intended to make a statement .... and as I type, I see that an email has come in from him. Back in a mo.

    And here it is, with permission to publish in full:

  12. Christopher

    Christopher Senior Member

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    What is his official view now anyway?
  13. greybeh

    greybeh Guest

    I am from the US. I am just horrified and trying to spread the word to fibro patients (of which I am one).

    I want to know what else I can do. I will write to Wessely when I gather my thoughts but I doubt this will be a productive measure.

    I have tried to educate others in the US about what is happening overseas, too. In my mind, it's a crime. It shows a true lack of compassion for those who are living with a potentially disabling condition. It is down-right a DENIAL of necessary medical care. One should not have to be fearful of being locked away!

    Of course, I'm not saying anything that is not a basic statement that most human beings would agree with. I feel I have a fundamental responsibility to people who are treated so badly. You folks have my support and I will do what I can to spread the word.
  14. Koan

    Koan Be the change.

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    I was just wondering that, myself, Christopher.

    It sounds like his official view is that he does not now, nor has he ever in the past, had one.

    The Proctor family will be very surprised, indeed, since he most assuredly had one about them.

    :confused:
  15. Martlet

    Martlet Senior Member

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    I don't know what his official view is. He seems to be covering all bases. I sent him a second email, in my best politician's voice that I used to use when advocating for constituents in a former life, respectfully disputing that the British criteria is the same as is used globally, reminding him that it embraces not just CFS/ME but also those suffering from primary depression, self-resolving and very common post-viral syndromes and a host of other illnesses, which is why they may not be able to reproduce the same results in the UK.

    I also suggested that the excitement surrounding the XMRV discovery has a different feel to it than the many false starts of the past, particularly in the scientific community where there now appears to be a lot of excitement.

    Finally, I told him I am sorry if he has suffered abusive letters, but told him that I can only imagine what I might have been like if I had not received such a prompt diagnosis or if one of my daughters had been diagnosed with a disease as a result of non-existent childhood abuse.

    The secret is to be polite. He seems eager to respond!
  16. orion

    orion Senior Member

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    Hmm. Very strange on several levels.

    I certainly give Wessely some credit for having responded to the emails. Frankly, I'm surprised a man in his position has the time.

    I'm also surprised by the conciliatory tone of his replies. I honestly don't know what to make of it. Is he sincere, is he being disingenuous, or is he just running scared?

    It may seem ungenerous not to automatically give him the benefit of the doubt. But I have followed Wessely's work for many years and have no illusions about the man. He has been damned by his own words and actions many times over. He also has a reputation for tailoring different messages to different audiences.

    I suppose there is the small possibility that Wessely has genuinely turned over a new leaf. However, I won't consider him rehabilitated until he has taken responsibility for his past words and actions, and apologised unreservedly for the harm he has done to ME sufferers over the past 20 years.

    Wessely, if you're reading this thread then now's your chance.
  17. orion

    orion Senior Member

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    It'll be interesting to see whether you're right.

    I'm guessing that, as the questions become more probing, Wessely will eventually clam up. He likes responding to vague generalities, but rarely gives a straight answer to anything specific.
  18. Martlet

    Martlet Senior Member

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    I suspect you are right in both your posts. I too have followed his work, although not read all his papers.

    On benefit of the doubt, I suspect that he does care about his patients, but is completely and utterly on the wrong track while being totally convinced that he is absolutely right. It is possible to be sincerely wrong.:)

    I do give him credit for responding. I was looking at the clock and thinking "his Monday evenings must be very dull that he has time to write back to me immediately" but I also suspect that this news is unnerving for him and his ilk in the psychiatric community and if the results are replicated, I think that rather than an apology, we can expect the psychiatrists to just fade into the background and hope we all forget.
  19. Speaking as someone from the UK I can tell you that this is classic Wessely. He appears to be genuine and sympathetic and reasonable. Sadly his actions speak louder than words. He has created a terrible climate for ME patients in the UK, absolutely dreadful and has often been guilty of denigrating the illness and it's patients. For one example he was involved in a case where a severely ill virtually paralysed young boy was subjected to horrific psychiatric "treatment" including throwing him into a swimming pool, i.e swim or drown. He couldn't swim.

    This is the real Simon Wessely. Please don't be taken in by his oh so reasonable persona. Whilst I can't condone threats or anything of that nature against him, or anyone, I can understand the anger that lies behind these peoples' threats. Actually he loves to play up to this and always mentions it. I doubt whether it is anywhere near as bad as he claims. Just another example of this slimy man's behaviour.
  20. Martlet

    Martlet Senior Member

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    I've just been re-reading Ean Proctor's story. For those unfamiliar with how M.E. has been treated in the USA, and for a good cry as well as a laugh, you can do no better than to purchase the movie Wide Eyed And Legless known in the USA as The Wedding Gift.

    It showed on British television not long after I was diagnosed and my friends were scared that I might be watching it, lest it frightened me. It didn't. Starring Julie Walters, who played the role of Diana Longden, it could not fail to have me in hysterics, but also made me profoundly sad at the treatment this poor woman received.
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