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S. Wessely: "PACE trial, which tested interventions with an impeccable safety record"

Discussion in 'General ME/CFS News' started by Dolphin, Dec 26, 2011.

  1. biophile

    biophile Places I'd rather be.

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    Good point. I'm open to the hypothesis that in some sudden onset cases triggered by a virus, ME/CFS is the final result of an already developing underlying disease process which may manifest subtle symptoms in the "premorbid" state. Would be unsurprising, some neurological diseases show this trait as well.

    This is one of the studies I must have been referring to, Harvey et al inc Wessely 2008 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3196526). Although it was prospective, it did not properly evaluate their participants for CFS so is therefore probably unreliable on the issue of risk factors.

    "Those with psychiatric illness between the ages of 15 and 36 years were more likely to report CFS/ME later in life with an odds ratio (OR, adjusted for sex) of 2.65 [95% confidence interval (CI) 1.265.57, p=0.01]. [...] At age 53 years, participants were again interviewed at home by trained nurses. During this semi-structured interview they were asked if they had ever been diagnosed with CFS or ME. [...] Although the use of self-reported CFS/ME is the main limitation of this study, <insert a series of unconvincing justifications for why this isn't really a significant weakness>."

    They point out that the association with premorbid psychiatric symptoms is even stronger when excluding non-doctor diagnosis of CFS. But relying on the accuracy of real world GP diagnoses of CFS for an epidemiological study is a major stretch.

    Well said, I wish I was that concise in my previous rant!

    This isn't the first time I have seen Wessely refer to psychiatric as "whatever that means". I think he is taking a dig at those he believes holds the opinion of naive Cartesian dualism. He and other fellow CFS biopsychosocialists apparently see themselves as the illuminators of the grey area between mind and body. However, he/they have not really made any significant contributions to elucidating the supposed mechanisms between mind and body in CFS. He/they just like to say that such a grey area exists and sometimes include a few simplistic arguments, and then say that a distinction between mind and body is "unhelpful" for CFS, then use these to dismiss criticism of the cognitive behavioural approach.
     
  2. biophile

    biophile Places I'd rather be.

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    What about the stigma of Wessely's dubious claims

    What is worse: (1) Endue the stigma of mental illness when given an accurate psychiatric diagnosis. (2) Given a CFS diagnosis and endure not only the stigma and psychobabble that comes with having an alleged psycho>somatic illness which is doubted or despised by much of society, but every time we challenge certain types of dubious claims we also must endure the stigma of the stereotyped ME/CFS militant, the irrationally angry extremist who is anti-psychiatry to avoid stigma of owning up to supposed mental problems or is too stupid to understand psychobehavioural factors and the mind body problem.

    We also need to ask about the stigma of Wessely's dubious claims made over the years, regarding both CFS itself and comments about patients. There should be no doubt that in his career he has had significant influence, "rightly or wrongly", on medical professionals' opinion of CFS. He is only directly responsible for what he has said and done personally, not necessarily for how other people have supposedly "misinterpreted" his work, although he does not seem all that concerned with such, just like PACE were unrepentant about how "normal" was spun as "cure" in coverage of the trial.

    Wessely is now perpetuating the myth that his school of thought is mainly under attack because people just want to avoid the stigma of mental illness, and by doing so he is contributing to the stigma of CFS with negative stereotypes which his own research has refuted.

    Good find Sean.

    The "organic" and "non-organic" factors need to be separated in order to understand disease mechanisms and treatment options. No one would sanely say that there is no need to distinguish between "organic" and "non-organic" factors in heart disease with the comorbid depression that can influence outcomes. Even if CFS involved a fuzzy interaction between "organic" and "non-organic" factors as proposed by Wessely, the appropriate course of action would be to understand the interaction between these distinct factors, not ignore the distinction between them because of a misguided appeal to pragmatism! Wessely has been repeating similar statements through his career. It's pretty amateurish and unimpressive for seasoned professionals who are supposed to be interested in philosophy of mind.

    Wessely implies that PVFS by default restricts one from considering "the complexities of mind-body interaction". This could be interpreted as an insult. If anything, it prompts one to consider it more, at least in my experience. After ME/CFS onset in youth I was seduced by psychobabble and mind over body ideology and the biopsychosocial approach. When these failed me I had to take a more serious and skeptical look at them to sort out hype from reality. Illness was a catalyst in a transformation of my understanding of the mind body connection.

    It can also useful to have both a subjective and objective understanding of an issue to see where the correlations are. Although subjective experience can introduce bias which needs to be accounted for, people without that subjective experience do not have the insights that it can bring. Over 20 years ago Wessely wrote about the virtues of being "unbiased" by illness in research. Where has this gotten him and his collegues? They seem to be groping in the dark and lagging behind everyone else, with some major biases of their own.
     
  3. Dolphin

    Dolphin Senior Member

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    Yes, this is another reason I tend to question them (which affects my memory I find) - I particular, I think lots of cases have likely been missed.
     
  4. Dolphin

    Dolphin Senior Member

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    Of course, other researchers would have no biases: no preferences for example for treatments they might offer that they might like to continue to offer (or might be able to offer, or not offer as the case might be); no theories that that they have previously presented that they might not like to see dismissed, etc ...

    Well said/astute observations (about value of having the illness, etc.).
     
  5. Sean

    Sean Senior Member

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    I think Wessely's use of the word "inevitable" is a serious problem, and an early warning of the propaganda tactics he would go on to use.
     
  6. Dolphin

    Dolphin Senior Member

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    Anyone write to them to see if they'd take a letter to the editor or a piece with another view? I should really be doing other things so don't want to be the main instigator but would certainly look over/give input into a submission by one or more others.
     
  7. joshualevy

    joshualevy

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    What is your source for saying that Rituximab had a bigger effect than PACE? They both used SF-36, and I took a very quick look at the both of them, and it looks to me like PACE had twice as large a result as Rituximab. I think it would make a great post to do a head to head comparison for both SF-36 results and safety results. (Of course Rituximab is a much smaller study, but still it would be an interesting comparison.)

    Joshua (not Jay) Levy
     
  8. Dolphin

    Dolphin Senior Member

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    The bit in blue in his text explains it.
    Otherwise: http://www.plosone.org/annotation/l...notation/f31cc17f-d930-4bb5-828b-cfadc2fc37c9 (discussion with authors). The authors confirmed they used normed scoring - so their numbers mean different things to the PACE Trial numbers.
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Joshua, another problem is that they lowered the threshold of what they considered normal or improved functioning (forget what term they used) during the study, to a level that was below the topmost cut-off for inclusion in the study. So theoretically someone could have entered the study, gotten worse from their treatments and then be counted as 'improved.'

    GET not only doesn't work, it's harmful for most patients with ME as reported by Kindlon in his metaanalysis of surveys (51% of ~4200 survey responses). This finding also makes obvious theoretical sense.

    White admitted in writing this "CFS" study does not apply to ME.
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think the PACE retraction was a joke by Dr. Speedy who writes the NICE blog.
     
  11. alex3619

    alex3619 Senior Member

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    Hi justinreilly, you could be right. The website has very many jokes firmly directed at the biopsychosocial movement. Bye, Alex
     
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  12. biophile

    biophile Places I'd rather be.

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    Speedy's PACE retraction does sound like intended sarcasm. I think at a bare minimum there should be a partial retraction of PACE, the ridiculous post-hoc analyses have to go.
     
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  13. Sean

    Sean Senior Member

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    Yep. The original protocol for analysis must be done and published, to compare and contrast.
     
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  14. biophile

    biophile Places I'd rather be.

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    But according to certain Bad Science skeptics, patient groups wanting a reanalysis according to the author's original goalposts is just data mining to get the results we want, while there is nothing suspicious about authors with reputations at stake widening the goalposts after seeing the trial data.
     
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  15. Mya Symons

    Mya Symons Mya Symons

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    "This is exactly what did happen when a very small trial of a drug that modulates the immune system (and which has some nasty side effects) was greeted with acclaim from the same sources that tried to discredit the PACE trial, which tested interventions with an impeccable safety record."


    So, he is saying here that the Rituximab seemed to work because they "modulated the immune system", correct? Isn't he contradicting his own theories then. If a drug makes ME/CFS patients better by modulating the immune system then it is not a psychological disorder, right?
     
  16. biophile

    biophile Places I'd rather be.

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    I assume you meant Rituximab. Anyway, I doubt it. He may argue that the immune disturbances are primarily due to cognitive-behavioural factors and that the effect of Rituximab was temporary because the underlying cause of the immune disturbances (cognitive-behavioural factors) weren't resolved.

    On the lighter side, Wessely has been quoted as saying, "A man has got to know his limitations and my limitations are immunology." (http://www.meactionuk.org.uk/Observations_on_Wessely's_evidence_to_Lord_Lloyd_Inquiry.htm)
     
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  17. Enid

    Enid Senior Member

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    Well hurrah - and about time too. Why should I have to wait 12 years (others much longer) during the UK medical profession's missed diagnosis.
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would say his limitations are empathy and then common sense followed by science. Psychology is mostly witch doctor crap in my opinion.
     
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  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    I would say
    A man has to know his limitations and with Mr Wessely, finding his ass without the help of GPS, MRI and probably military drones plus the services of the entire MOD would seem impossible, hm? :p

    *rimshot* :D
     
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  20. Levi

    Levi Senior Member

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    We need to organize a globally recognized "Minute of silence and prayer" by ME/CFS patients and community the world over, asking for Simon Wessley to go quiet on the subject of ME/CFS and leave us alone. We can all light a candle and put peaceful silencing energy into the universe, with a prayer that this disturbed man does as he has promised and leaves the field of ME/CFS to other more compassionate professionals. THAT would be a thing of beauty.
     

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