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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. condra

    condra

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    If anyone hears of an official statement on the XMRV findings from Simon Wessely of King's College Hospital, London, do please let me know.
  2. condra

    condra

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    Nevermind, I've been googling, and I found this from Nancy Kilmas on YouTube:

    Simon Wessely on XMRV,( British DOH/NHS Psychiatrist, and self annointed 'CFS' expert who denies ME exists):

    ''"It's very preliminary and there no evidence to say this is relevant to the vast majority of people in the UK with the condition."
    He goes on to say:
    "...It's a contentious area that lies somewhere between medicine and psychiatry."

    By the way, if anyone feels the need to contact Simon Wessely and ask for his opinion, he can be emailed here:
    http://www.iop.kcl.ac.uk/staff/profile/contact.aspx?go=10206

    This is what I have written:

    "
    Dear sir,

    I would be extremely grateful if you could take a minute to outline to me your reaction to the recent findings in America about the likely relationship between XMRV and CFS/ME.

    Sincerely,

    Declan Murphy
    "
  3. Andrew

    Andrew Senior Member

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    Well, considering that he doesn't differentiate between CFS and idiopathic chronic fatigue, it may well be that all of his non-CFS patients won't be helped.
  4. Mark

    Mark Acting CEO

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    The Wessely email link above seems to be broken so here it is again:
    email Simon Wessely

    I'd hate for anyone wanting to get in touch to fail to get through to him. ;)

    "there is no evidence to say this is relevant to the vast majority of people in the UK with the condition," he tells the world. Weasely words if ever there were. His statement is highly questionable because the only evidence that exists is that some of the WPI cohort were reportedly from England, and they tested positive too. One thing's for sure, there's definitely no evidence that this is NOT relevant to the vast majority of people in the UK with the condition. Never trust an establishment figure who starts a sentence with the words "There is no evidence...". They tend to use it to justify not doing any research into something, and surprisingly nobody seems to notice the Catch-22...

    And by the way, Andrew, I think there's every chance that the people with ideopathic chronic fatigue but not CFS will also turn out to lie on the XMRV spectrum as well. I rather hope so, because they probably have an illness with a physical cause as well, and it would be rather nice if there was no-one left for him to practice his psychotrickery on.
  5. Min

    Min Senior Member

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    "Commenting on a study that stated XMRV virus was found in two thirds of CFS patients, Wessely said this research fails to model the role childhood abuse, psychological factors, and other infections may play in the illness"

    "Wessely has been the subject of criticism from patient groups and professionals. In an article on chronic fatigue syndrome, The Guardian calls criticism from CFS advocates a "vendetta""

    http://en.wikipedia.org/wiki/Simon_Wessely

    Wessely's colleague psychiatrist Ben Goldacre works for the Guardian newspaper, who are often less than polite about ME/CFS patients:

    http://nhsblogdoc.blogspot.com/2009/10/myalgic-encephalomyelitis-me-science.html




    I don't believe we will have unbiased taxpayer or AfME funded xmrv research in the UK because the Oxford criteria will be used to select patients - this muddles mild fatigue and depressive states and deliberately excludes those with neurological M.E.
  6. condra

    condra

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    I got a reply!

    Here is what Wessely wrote:

    ____

    EDIT!

    Simon Wessely has emailed me requesting that I not quote him without prior permission.

    Draw your own conclusions!
  7. zero

    zero Guest

    This guy is either a complete bullshitter or highly delusional. My guess is a little of both.

    (And is that really how poor his spelling, grammar, and punctuation are? Wow, real professional.)
  8. condra

    condra

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    I pasted it exactly as it was written, though in fairness, it was good of him to reply at all (loathe as I am to say that)

    As our understanding of XMRV develops over time, I am hoping for, though not expecting, a lot of public apologies from various entities in medicine, including Wessely.

    True scientists, real, valuable, sincere scientists, should admit, and celebrate the emergence of compelling proof that their hypothesis are wrong.
  9. Alice Band

    Alice Band PWME - ME by Ramsay

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    Yes, he really writes like that. Have had correspondence before

    SW was quoted in the New Scientist report on XMRV

    <start>

    "It's a contentious area that lies somewhere between medicine and psychiatry," says Simon Wessely, a psychiatrist at King's College London who has been vilified by patient groups for his scepticism of cut-and-dried explanations for CFS and his assertion that psychological factors may play an important role.
    <end>

    and the Independant newspaper

    <start

    However, other researchers emphasised that the numbers published so far are too small to conclude anything about the cause of chronic fatigue syndrome. "It's spectacular but needs replication. And I hope that no one is thinking of prescribing anti-retrovirals on the basis of this," said Simon Wessely, professor of psychological medicine at King's College London. "It's very preliminary and there no evidence to say this is relevant to the vast majority of people in the UK with the condition."

    <end>
  10. Scavo86

    Scavo86 Senior Member

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    Wessely doesn't actually appear to be overly bullish in that reply does he, maybe he is starting to recognise the fact that times are a-changing!!!
  11. condra

    condra

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    I agree, defiant but much less arrogant than usual.
  12. Mark

    Mark Acting CEO

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    He suffers from a recently-discovered condition (see other threads) called Medically Unexplained Psychologising (MUP), also known as Wessely's Disease. In other words, he's a muppet.:)

    Great work getting a reply from him though, and good on him for that I suppose; it opens the possibility that we could open a real dialogue with him and confront him with the evidence. Probably best if we do so with one voice rather than bombarding him with abuse, otherwise he'll just clam up. Let's get our best advocates on the case and continue the conversation.

    The most startling part for me is that he claims not to understand how they made the leap from prostate cancer to CFS. They've explained this in a perfectly clear way, thus:

    They read the prostate cancer/XMRV study and noticed that it involved an association with deficiencies in the RNASEL pathway. They recalled that several studies have found an association with RNASEL deficiencies and CFS. They put all that together and postulated that XMRV may be linked to CFS. They then tested and found that, lo and behold, it was!

    In other words, they made that leap based on scientific evidence. The fact that their theory proved dramatically correct is yet further evidence that they are on to something. (Even though they did also find XMRV in CFS patients without RNASEL deficiencies). The fact that their theory was based on a logical connection in the first place doesn't count as scientific evidence to the wider world, but to me such chains of reasoning DO count as scientific evidence, if only to the individuals who constructed those chains. After all, they have constructed a theory, tested it, and found it was correct. What does the scientific method mean if not that?

    It might well be worth explaining the above to him, perhaps look up the RNASEL details and WPI quotes first though and explain it a bit better than I have done above.

    Finally, to be fair to him, I do think he's right that it's too early to be trying treatments with antiretrovirals, which might have nasty side-effects further down the line. It's more appropriate to wait a bit for more reliable treatments, IMO, there will probably be lots of options including natural ones that are much safer.
  13. Alice Band

    Alice Band PWME - ME by Ramsay

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  14. Mark

    Mark Acting CEO

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    The study doesn't model those factors, but it might be worth mentioning to him that they found that XMRV replication is encouraged by cortisol and cytokines, so that does open up a potential explanation as to how any form of severe physical or mental stress might cause the latent virus to spread and infect more cells. So yeah, it fails to model that, and merely explains it!

    Then again, do we really want to join the dots up for him? Maybe the less he knows, the more incriminating tosh he'll come up with...
  15. Alice Band

    Alice Band PWME - ME by Ramsay

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    There is no way Mark that I would want to give him ideas about cortisol....

    He's already been down that track and I don't want to see any more money wasted on his patients.
  16. Athene

    Athene Never give up

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    Class action lawsuit?

    Does anyone think there may one day be a case for a class action lawsuit against Mr. Wessley by everyone he has tortured with his "therapy"?
  17. annunziata

    annunziata Senior Member

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    I've always thought that if the etiology of CFS were ever discovered, and if it became clear to everyone that it is an organic illness, there would be a whole lot of revisionist history. We will be hearing that Wessely and Reeves were always working for the Resistance.

    Amy
  18. Marylib

    Marylib Senior Member

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    Dethroning

    How does Wessley get de-throned? I understand how it can happen to Reeves here in the USA, but not how Wessley can be removed.
  19. Mark

    Mark Acting CEO

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    Regarding how Wessely can be dethroned, and how he can be sued, I have absolutely no idea! Don't know how those things might work, and I've lived in this country all my life - what does that say?!

    We don't have 'class action lawsuits' here, and I don't know what the equivalent might be. But my guess from how these things go is, you'd have to get a hell of a lot of money behind you before you could even try it, and if you lose, you lose your money...and I seriously doubt you could win a case because he was going on the "best evidence available at the time". His own evidence, sure, but that wouldn't be the point...

    Regarding dethroning him, all you could do is write a load of polite letters to the right people (whoever they may be, the Health Secretary via your MP I guess, the appointment is probably purely his or her decision) and hope they do something (very rare). On such an issue, I doubt you could get any weight of public pressure, so you'd have to try bombarding people with letters until they get bored of it. His international infamy might count for something I suppose. When he does go, I expect he'll get a fat pension. But unless all the Reeves-Wessely definition patients have got XMRV as well, I suspect he'll be around for a good while to come, still in charge of CFS but with XAND patients no longer subject to his attentions.

    I'm no lawyer though, and the British political system never has made sense to me. Do any other Brits on here have any clues? Does anybody know the English for "accountability"?...
  20. joyscobby

    joyscobby Senior Member

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    We do have class action lawsuits here in the UK eg. PTSD (post traumatic stress disorder) military personell (falcklands etc.) vs MOD (Ministory of Defence)
    is an example. I think in Scotland there was a class action re hemopheliacs and hepititus. They was also one in scotland re sloping out in prison and human rights. I am sure there are others. Our legal system is not that simple though as Scotland has it own legal system seperate from the rest of UK. Maybe problems over juristiction. However the European court might be the best avenue under human rights. Identifying the right Leagle Eagle would be the key.

    Of course any action would depend on the quality of evidence etc. etc. may prove difficult. Things like medical files get lost etc. and who do you sue.

    I myself would probably not want to go down the legal route as it is a long drawn out process, with the possiblity of not winning. Enough of my life has been wasted.

    I do not have a legal background so maybe wrong and please exuse spelling and grammar bad day.
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