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UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

Discussion in 'PsychoSocial ME/CFS Research' started by Michiel Tack, Feb 6, 2019.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    And actimetry, the only objective measure in the whole trial, was removed once they learned that a Dutch trial had shown null results.

    You know, I'm sensing some kind of pattern here that makes me think maybe these people are not on the up and up.
     
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  2. dave30th

    dave30th Senior Member (Voting Rights)

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    you're kind of the suspicious type, I gather...
     
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  3. daftasabrush

    daftasabrush Established Member (Voting Rights)

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    Aside from the factual inaccuracies in that, they claim there is no evidence authors profited from their conflict of interest.

    - Jessica Bavinton is still running a private company offering GET, wonder how much she's made?
    - Trudie Chalder's book sales?
    - Gabrielle Murphy's CBT book is only a few years ago

    I bet some are doing after private insurance work involving it (again), possibly DWP work, plus all have indirectly profited by justifying their own jobs with £5 million of research funding AND a "trial" that claimed Psychologists / Psychiatrists and Physiotherapists helped people "recover".

    Even the at the Information Commissioners Tribunal QMUL mentioned the financial harm possible from releasing the data - which shows what financial influence they had in order that QMUL spend £250,000 (!!) defending their scientific fraud.

    Peter White's early retirement at a surprisingly odd age avoided a GMC investigation. Nothing fishy about that... I notice he's still publishing as much as before from took early "retirement" from clinical work.
     
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  4. Andy

    Andy Committee Member & Outreach

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    Assuming that it works OK, attached should be a copy of the decision - this will only be available to members due to how the forum software works.

    I can only guess at your second and third questions - my assumption is that, absolutely, things like this should be kept as part of Commons business and that it should be available to the public, unless there is some convincing argument against.
     
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  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    Given how much other research has exactly the same flaws ( unblinded and subjective), how much policy is underpinned by this, and how much money is involved if the status quo changes, how could it play out otherwise?

    As i have said before. This is the UK. The " dirty blood" scandal of the 1980s has not yet been resolved , i suspect as the pertinent people responsible have not yet died whilst not enough of those who are affected have died to minimise any financial hit.

    The rest of the world may come to see things for what they are, but UK is retreating into some weird " days of empire" bubble at the moment and the alternative reality may play out for some time until someone takes the role of the little boy in "The Emporer' s New Clothes" and shouts loudly enough for everyone to hear.
     
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  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    A one-sided review? What happened to giving the other side fair time?

    Obviously not how it's done.
     
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  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks @Andy. Copy of the document is attached.

    Still wondering what the significance of ‘being unable to be archived’ is.
     
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  8. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Action for ME have responded, as the unnamed "patient group": https://www.actionforme.org.uk/news/health-research-authority-on-the-pace-trial/

     
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  9. Trish

    Trish Moderator Staff Member

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    AfME still don't get science. In the last paragraph they are still hedging their bets about CBT/GET:

    The scientific evidence (PACE and FINE) do not support even this. If a trial is a null trial, it does not support the idea that the treatments are helpful for anyone. On their logic, since some in the control group improved, they could equally say doing nothing is 'potentially moderately helpful for a minority of pwME'. I'm sure the same could be said for homeopathy, or eating bananas. ME is a fluctuating condition.
     
  10. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I wish they wouldn't hedge like that too. Any treatment that is based on the premise of "unhelpful illness beliefs" or "deconditioning" is not potentially moderately helpful to anyone. The key (harmful) aspect of CBT/GET is that patients are expected to ignore symptoms and push through. Any variant of those treatments that doesn't have that expectation cannot be defined as synonymous with "those treatments", even if they look similar.

    ETA: And because we don't know whether PACE trial participants stuck rigidly to the treatments or not (as this was not recorded), we also don't know whether those who improved did so *because* they didn't stick to the treatment regimen.
     
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  11. Trish

    Trish Moderator Staff Member

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    @Action for M.E. tagging to draw your attention to this concern.

    I appreciate AfME distancing itself from its past involvement in PACE, but please consider more carefully your statements about CBT/GET.
     
  12. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    "...Chief Executive, Sonya Chowdhury, explained that neither she nor the current Board of Trustees would agree to be involved in this way now, as reflected by our current biomedical research strategy. She said: “I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.


    That is not quite the appropriate apology. "I'm sorry you feel that" does not take responsibility for their actions.

    They should be saying:

    "I apologize, we have caused harm."

    If it was a one-off, I wouldn't even mention it, but it is part of their pattern, and it is disconcerting and off-putting for any other ME org that would consider working with or being part of a coalition with them.

    Obviously they still have to make some changes before they will be able to generate trust.
     
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  13. Barry

    Barry Senior Member (Voting Rights)

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    All we need is a little faith, faith, faith, faith, .......
     
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  14. Barry

    Barry Senior Member (Voting Rights)

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    What is the timeline of that?
     
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  15. Andy

    Andy Committee Member & Outreach

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  16. Andy

    Andy Committee Member & Outreach

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    @Brian Hughes makes this very valid point at the end of his blog, link in above post
     
  17. Trish

    Trish Moderator Staff Member

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  18. Barry

    Barry Senior Member (Voting Rights)

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    Me too.
     
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  19. obeat

    obeat Senior Member (Voting Rights)

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    Does Sonia Chowdbury check her statements about GET/CBT with Prof Newton?
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    Chalder and White literally registered a company to benefit from this research.

    It seems that they didn't do much with it but come on, this sham investigation was weak even by the standards we expect.
     
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