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Cochrane ME/CFS GET review temporarily withdrawn

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Trish, Oct 17, 2018.

  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,234
    Faith in Cochrane lost. There is nothing defensible about the claims that CBT and GET work.

    All they're doing is giving endless benefit of doubt to people who have already demonstrated to be incompetent or dishonest.
     
    MEMarge, Inara, Simone and 11 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    13,142
    Location:
    UK West Midlands
    Right but it’s their own red tape so they should be capable of addressing it Clearly are currently more concerned about the politics of treading on people’s toes than doing the right thing.
     
    MEMarge, Daisymay, inox and 12 others like this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    Yes. "I'm afraid the rules we've written for ourselves stop us doing the decent thing" is a rubbish excuse.
     
    Dolphin, Simone, inox and 8 others like this.
  4. Andy

    Andy Committee Member

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    21,810
    Location:
    Hampshire, UK
    Interesting wording, logically it implies that at the moment it shouldn't be used to inform health care decision making to my mind.
     
    MEMarge, Dolphin, Inara and 10 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,142
    Location:
    UK West Midlands
    It’s a backstop get out of jail card so they can give the appearance of doing the right thing but ineffective at actually ensuring the review as it stands doesn’t still influence policy - it’s been pointed out that hiding it away in the news is completely useless at mitigating the impact of the dodgy review still being live. If this wording was added as a warning on page 1 it might be effective but as it stands it is a chocolate fire guard
     
    MEMarge, Dolphin, Inara and 10 others like this.
  6. dreampop

    dreampop Senior Member (Voting Rights)

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    443
    Yup, it says to me "it shouldn't be used to inform health care decision making but we will find a way to keep the core concepts by rewording the conclusion." I mean it sounds like they are saying we won't review it properly, but we will find a way to make the treatments fit, probably by tailoring the limitations of CBT/GET.

    Isn't the point of a review that you don't know what conclusions you will find before you start?
     
    MEMarge, Simone, obeat and 8 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    Yet they have given a hard deadline (admittedly another one!) which they surely cannot extend further. And they can surely never really meet the criterion "ensuring that the conclusions are fully defensible". So will it be fix it or fudge?
     
  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    2,134
    Location:
    Canada
    I don't know . . . is gambling allowed on this forum? ;)
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    13,273
    Location:
    London, UK
    My reading is that somebody in the system is admitting failure. That may not change anything but someone has broken ranks. I also think that specifically naming Bob is relevant.
     
    MEMarge, andypants, Dolphin and 14 others like this.
  10. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    414
    Location:
    Tasmania
    Well they could ... if they changed the conclusion to say there is no reliable evidence of efficacy. But I am dreaming, aren't I?
     
    MEMarge, mango, Simone and 10 others like this.
  11. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    A very valid point.
     
    MEMarge, Simone, Sean and 2 others like this.
  12. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    The note does seem to lay it on the line pretty firmly to the authors; they may have agreed but I very much doubt it was with wholehearted enthusiasm.

    "in which time the author team will amend the review"

    " improving the quality of reporting"

    "ensuring that the conclusions are fully defensible and valid"

    "will also address concerns raised in feedback since the Robert Courtney complaint"

    To my mind the above statements almost amount to a dressing down, and a challenge to the authors.

    This one puzzles me a bit ...

    "The amendment will not include a full update, but a decision about this will made subsequently."

    ... what exactly is it saying? What decision about what exactly? Or am I just being a bit fick?
     
    MEMarge, andypants, John Mac and 14 others like this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    12,299
    Location:
    Canada
    This is indefensible. It has been up for years. It is heavily cited as a strong authority source. A review of something that deserves to remain a recommendation should not take this long. If there are such significant problems that it takes so much effort to get it right, there was something clearly wrong with the initial process and it needs to be retracted prompto.

    They really don't appreciate the impact this is having, to recommend harmful guidelines that do not meet the most basic requirements. Completely irresponsible and reckless playing with people's lives.
     
  14. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    2,308
    So now they are aligning Tovey leaving ( end of May) and the (next) date for the review amendment.

    Significance?

    It is a disgraceful failure to take responsibility.


    ETA: completion of the word responsibility which failed to print
     
    MEMarge, andypants, rvallee and 5 others like this.
  15. TiredSam

    TiredSam Committee Member

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    10,482
    Location:
    Germany
    Is a wildly over-optimistic interpretation possible? For example someone is ensuring that at a later date the authors cannot complain about not having been given every possible chance?
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    The dates Robert Courtney submitted his comments:

    1. Query re use of post-hoc unpublished outcome data: Scoring system for the Chalder fatigue scale, Wearden 2010.
    Robert Courtney
    16th April 2016
    https://sites.google.com/site/mecfs...-fatigue-syndrome/fine-trial-unpublished-data

    2. Assessment of Selective Reporting Bias in White 2011.
    Robert Courtney
    1st May 2016
    https://sites.google.com/site/mecfs...-syndrome/pace-trial-selective-reporting-bias

    3. A query regarding the way outcomes for physical function and overall health have been described in the abstract, conclusion and discussions of the review.
    Robert Courtney
    12th May 2016
    https://sites.google.com/site/mecfs...isreporting-of-outcomes-for-physical-function

    4. Concerns regarding the use of unplanned primary outcomes in the Cochrane review.
    Robert Courtney
    3rd June 2016

    They've already had well over two years. I think that most people would see that as long enough.

    Also, their initial responses to those comments show that their judgements just cannot be trusted.
     
    Last edited: Mar 9, 2019
    MEMarge, JaneL, rvallee and 14 others like this.
  17. Sean

    Sean Moderator Staff Member

    Messages:
    7,044
    Location:
    Australia
    I think what this shows most of all is just how ill-prepared Cochrane are for dealing with this kind of problem, and that they urgently need to develop more robust and timely means of doing so.

    The rule (?) that they cannot withdraw a paper without the author's consent is particularly troubling. Editors should be able to withdraw a paper unilaterally, once all other reasonable options have been explored.
     
    MEMarge, andypants, Dolphin and 15 others like this.
  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    3,819
    Location:
    Australia
    If they're not doing a "full update" (meaning they're not examining new studies), why does it take 6 months just to make a few modest changes!?!
     
    MEMarge, JaneL, rvallee and 14 others like this.
  19. Jim001

    Jim001 Established Member (Voting Rights)

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    53
    I just keep hoping that, after the review authors forced this move to withdraw into the open, Cochrane has pivoted to a very visible display of their 'reasonableness' whilst leaving the authors no place left to stand. But I have been able to follow this story only sparsely.
     
    Last edited: Mar 9, 2019
    MEMarge, andypants, Simone and 6 others like this.
  20. inox

    inox Senior Member (Voting Rights)

    Messages:
    539
    Location:
    Norway
    I agree.

    "The amendment will not include a full update, but a decision about this will made subsequently."

    This is about giving the current review team a very, very last chance to make amendment to the current review - and there are strongly worded critisismen aimed at the review team, for the lack of quality of the current review. I'm sure there are some very not much happy people in Oslo now.

    They are not committing to posting the amendet version - but still leave it open if a full update should take place.

    " aimed at improving the quality of reporting of the review and ensuring that the conclusions are fully defensible and valid to inform health care decision making. "


    There isn't anything new here, other than more open critic aimed at the reviewers - and pushing the date to may. Since they already had made the statement about "soon as possible", they had to post another statement.

    This isn't Cochrane not taking the issues seriously, as this reads to me, but the authour team dragging their heels about letting go - while the editor is slapping them over the head.
     
    MEMarge, andypants, Jim001 and 11 others like this.

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