A general thread on the PACE trial!

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Esther12, Nov 7, 2017.

  1. Andy

    Andy Committee Member

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  2. rvallee

    rvallee Senior Member (Voting Rights)

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  3. Sean

    Sean Moderator Staff Member

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    Sharpe's tactic of blocking those who disagree, especially when they cite evidence, is going to backfire badly on him.
     
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  4. Andy

    Andy Committee Member

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    http://healthinsightuk.org/2019/04/...emed-bizarre-now-it-really-is-on-the-way-out/
     
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  5. AR68

    AR68 Senior Member (Voting Rights)

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  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    I am just surprised that noone already has.
     
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  7. Barry

    Barry Senior Member (Voting Rights)

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    Jerome Burne frames this in the context of NICE withdrawing their recommendations for CBT and GET for ME/CFS, and all those pwME and families that would then show to have been potentially maltreated. But I suspect there could also be a legal issue if NICE flagrantly ignored ever increasing indications that CBT and GET are being used to treat an illness mechanism that it is clear does not exist in the majority of people being so treated.
     
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  8. Barry

    Barry Senior Member (Voting Rights)

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    It is also interesting that a journalist who presumably felt the need to go quiet on this issue back in 2016, now feels the time is right to speak out again.
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    To be fair, the propaganda unleashed against us and in promoting garbage research was very effective and difficult to reject based on the institutional support it received. To this day none of the institutions responsible have let up, they are too committed and liable.

    Which will make the backlash all that more brutal. People have been lied to. This can hold on for a while, as people reject the notion, but once they accept they were fed a massive load of bullshit, the pendulum tends to swing back with spectacular force.

    Overpromising something that can't be delivered can seem great for a while, but holy crap did they go all in on overpromising, and then some.
     
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  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Jerome mostly covers other issues like diet ( with Patick Holford) and adverse reactions to medication, particularly the statins fiasco. He dips into ME and CFS, as and when. He knows Jo Edwards quite well I believe. He's attended Invest in ME conferences. He is quite approachable, so when asked to help out, he will!
     
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @rvallee nice comment btw; I think the MP who raised the issue of compensation for harms was
    Ed Davey (at the Westminster Hall debate).
     
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  12. Andy

    Andy Committee Member

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  13. Andy

    Andy Committee Member

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  14. Barry

    Barry Senior Member (Voting Rights)

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    I was really pondering the fact that somewhere a good while back now, either in this forum or PR, it was commented (possibly by @Jonathan Edwards), that a major TV documentary had been planned (or maybe ran), and been slammed hard by the BPS establishment, likely via the old-boys' network, and that UK journalists and their producers have been terrified into silence about ME/CFS ever since. (Note I'm not talking about the rumours of a documentary from a year or so back, but good few years before that). So it's really good to see a UK journalist putting his head above the parapet again.
     
  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I know Panorama has still an interest and I have had conversations with one of the producers in the last year/
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    A fair and accurate account of the controversy will not come from the UK, unfortunately. At least not until there is a major paradigm shift. There is too much influence against it, it would never get published, too much embarrassment. Although maybe it could get published elsewhere, it would be nice to finally have whistleblowers speaking out.

    Which of course will make a very interesting part of any future documentary coming from elsewhere. The cover-up is the most damning part, especially the consistent and well-documented objections that turned out to have been accurate and legitimate, despite having been rejected as irrelevant.
     
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  17. Mithriel

    Mithriel Senior Member (Voting Rights)

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    There was a documentary by Channel 4 (I think) possibly 20 years ago or more (I am not good on detail) which was about the way mothers of children with ME are investigated for Munchhausen's by proxy.

    One of the doctors said he had no been given enough right of reply, maybe said he was taken out of context so they were forced to apologise. So a programme about the abuse of children became about the "suffering" of the doctors doing the abuse.

    It is disgusting that the same institutional abuse of families with ME is still happening so many years after having it brought to public notice in a documentary.
     
  18. Sean

    Sean Moderator Staff Member

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  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Forskning.no, a Norwegian news site about research, has had a couple of critical articles about the PACE trial, but today they have an article claiming the trial was let completely off the hook by Health Research Authority.

    Professor Wyller is interviewed, so is Ingrid Helland, leader of the national competence center for ME/CFS, both known for their biospsychosocial approach to ME.

    Only speculations from my side, but was this an important article to get published before Cochrane's final decision about the review on GET and ME which is due in May?

    Forskning.no: Omstridt ME-studie undersøkt: Forskerne fant ingen metodefeil
    google translation: Controversial ME study investigated: Researchers found no method error

    HRA, which is a kind of watchdog for research, has concluded that the study was verifiable and met all the guidelines for studies that applied at that time.

    There is no reason to consider the PACE study to be of poor quality, according to Jonathan Montgomery, head of the HRA, in a letter to the Research and Technology Committee.

    ....
    Professor Vegard Bruun Bratholm Wyller believes the report from the British health authorities supports that the criticism of the PACE study has been unfounded. He is a senior consultant at the Children's and Youth Clinic at Ahus.

    "This criticism seems to be scientific, but in reality it is marked by a campaign aimed at weakening the credibility of the PACE study. The report that is reproduced in BMJ is just about just ethical / legal aspects, but the researchers behind the PACE study have recently entered in depth - and very convincing - on the methodological objections, he writes in an email to forskning.no.

    Read the relief here in BMC Psychology 2019.

    - There is therefore no need to question the main conclusion of the PACE study: Many patients with ME may benefit from cognitive behavioral therapy and that there is no reason to be afraid of the harmful effects of such treatment. This is also consistent with several other studies, and also fits well with what we otherwise know about disease mechanisms at ME, he writes.
     
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  20. Sean

    Sean Moderator Staff Member

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    Didn't the HRA report explicitly say it was not commenting on technical aspects (i.e. methodology), only on required ethical and legal compliance?
     

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