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Adverse outcomes in trials of graded exercise therapy for adult patients with chronic fatigue syndrome, 2021, White & Etherington

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Dolphin, May 31, 2021.

  1. Trish

    Trish Moderator Staff Member

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    Thanks for posting the full document, I have skimmed it but have run out of energy for a proper read. All I can say is their arguments are ridiculous and it's not science, it's a polemic.
     
    Ash, Joh, Channa and 16 others like this.
  2. dave30th

    dave30th Senior Member (Voting Rights)

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    The Journal of Psychosomatic Research is already dealing with the previous White paper, which misreported the follow-up to GETSET. Now they are allowing him to publish another piece of crap. The journal is obviously having an identity crisis. The current and previous two editors have categorically stated that subjective outcomes are fraught with bias when blinding is weak. But the journal's advisory board has White, Sharpe, Fink, Rosmalen and others who see no problem and specialize in unblinded studies relying on subjective outcomes. Either these studies are valid, per the auhors, or they do not provide authoritative and actionable evidence because of bias, per the journal editors. Both can't be true. The journal is in an untenable position.
     
    Last edited: Jun 1, 2021
    Ash, Jan, Yessica and 27 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Never heard of him but I suspect this says it all:

    (The conflict of interest being income for rehab.)
     
    Ash, Jan, Michelle and 15 others like this.
  4. Hutan

    Hutan Moderator Staff Member

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    It seems unlikely to me @Hilda Bastian, that it is a coincidence that the only person with ME/CFS on the Cochrane exercise review writing team, someone who has not previously expressed any interest or shown any expertise in evaluating GET trials, has publicly expressed her thanks to the team at a Defence Medical Rehabilitation Centre, and is reliant on the Navy's goodwill as she deals with a relapse. This is not the way to make patients feel that the review process is safe from manipulation and will arrive at a scientific truth.

    The issue of the composition of the Cochrane Exercise review writing team is discussed further on this thread:Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian
     
    Last edited: Jun 2, 2021
    Ash, Jan, Binkie4 and 20 others like this.
  5. Hilda Bastian

    Hilda Bastian Guest Guest

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    To be fair, Kay Hallsworth is no longer in the Navy: her bio statement begins with "was". (I disagree with the characterization generally - one of the criteria for consideration was "A history of interest in research on ME/CFS".)
     
    DokaGirl and Peter Trewhitt like this.
  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    The authors themselves now seem rather unenthusiastic or unsure about GET for ME: "GET is probably safe..." Not a ringing endorsement. (my bolding)

    Also more participants in the GET arm dropped out from trial follow up....doesn't appear to bolster the profile for this "therapy".

    GET for ME; what's the point for patients and their families if the goals of recovery, or at least significant improvement aren't met? Return to work or school? Are these ever measured or reported on? If memory serves success in these areas falls far short, if even measured or reported on. I guess results based goals are not important. Research funding continues in spite of this. GET for ME for its own sake.
     
    Ash, Jan, Subtropical Island and 12 others like this.
  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    GET for ME is "probably safe", looks like a retreat. CYA. In case of what...?
     
  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Wonder why the BPS Movement travels in the same groove over and over and over again.
     
  9. Barry

    Barry Senior Member (Voting Rights)

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    Maybe resubmission of the FOI request is needed, given they have clearly managed to overcome their primary obstacle to fulfilling it.
     
    Ash, Binkie4, Michelle and 10 others like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    I think there is an inherent bias within the CGI scale, given that someone could feel noticeably worse (and thereby of clinical significance), albeit not much worse. In which case their likely choice is going to be 5 on the scale, minimally worse, and thereby allows these analyses to consider out of scope for considering as deterioration.
     
  11. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    That's not a bias in the CGI scale. That's how the authors chose to define evidence of harm, most likely because that allowed them to find no evidence of harm.
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    It is very clear the main objective of this paper is to impact the NICE guideline review, given how it comments strongly on the implications of the current draft guideline being ratified.
     
  13. Barry

    Barry Senior Member (Voting Rights)

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    Which therefore still means the scale induces bias.
     
  14. Barry

    Barry Senior Member (Voting Rights)

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    If they are so confident of how right they are, then put their money where their mouth is and release the rest of the PACE data; they clearly should have nothing to fear by doing so. And they have demonstrated they still have the resources available to be able to do that.
     
    Ash, JoanneS, EzzieD and 9 others like this.
  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    What about the drug for arthritis that was banned because less than a hundred people worldwide were badly affected?

    I cannot believe that GET is not banned on the basis of the number of people who claim they were harmed. It would be a simple matter to check that people were house or bed bound
     
    Ash, Jan, EzzieD and 12 others like this.
  16. rvallee

    rvallee Senior Member (Voting Rights)

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    With an added "why did you mislead the tribunal?" and a note to the tribunal whether they care about such things, perhaps?

    This was an official response. It has clearly been revealed as BS. Does making false official statements to a tribunal matter in medical research and ethics? Doesn't appear to be the case. But the original FOI request was either clearly responded with a lie, or they felt no need to go back on it if and when White's health improved enough for him to be able to fulfil such a simple request, one that was already taken care of as part of the research protocol, confirmed by the official notes.
     
    Ash, inox, Invisible Woman and 5 others like this.
  17. Hutan

    Hutan Moderator Staff Member

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    Just noting, for the sake of completeness here, that we established on the Cochrane Exercise review thread that Kay has had permanent role with the Association of Royal Navy Officers since Feb 2021. Further discussion about that, and the extent to which the criterion of 'a history of interest in research on ME/CFS' has been met is on that thread.
     
    Ash, inox, Michelle and 4 others like this.
  18. Sean

    Sean Moderator Staff Member

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    GET should be tailored to the individual and guided by professionals who are expert in the delivery of graded exercise therapy with the aim of empowering the individual to take control of their own exercise plan and recovery.

    There is that whole patients are deluded morons who need to be guided by experts in how to get out of bed and wipe their own arse routine they have been flogging for decades. The story never changes.
     
    Jan, EzzieD, inox and 12 others like this.
  19. Barry

    Barry Senior Member (Voting Rights)

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    [my bold]

    Whilst still including the BS spin clause that it's all the patient's own fault if they still end up in a mess.
     
    EzzieD, inox, Michelle and 8 others like this.
  20. Adrian

    Adrian Administrator Staff Member

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    My first question to them would be if they are looking for deteriation then why choose a scale that they use as a secondary outcome in studies rather than the ones that were used as primary outcomes - given their record is this careful outcome selection. Also (and perhaps this is as I've only looked at the abstract) they don't seem to define a time scale over which the meaurements are taken.

    Then there are all the caveats around compliance to treatment and activity substitution that would normally be raised.

    And no look at the reasons for withdrawl
     
    EzzieD, Michelle, Hutan and 6 others like this.

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