Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Time to contact Cochrane?

Discussion in 'Advocacy Projects' started by Hutan, Aug 17, 2016.

  1. Hutan

    Hutan Senior Member

    New Zealand
    Clear evidence that the Cochrane report was biased
    The Tribunal on the release of PACE data noted, page 31:

    Cochrane is influential in ME/CFS treatment
    The Cochrane review of GET has been influential throughout the world in establishing GET as a useful treatment of ME/CFS. For example it is the basis for GET being recommended as a treatment for CFS in the Australian GP treatment guidelines.

    Cochrane is committed to independent bias-free reviews
    The Cochrane's Principle 4 notes that bias will be minimised:
    There therefore seems to have been a problem with the selection of the review panel for the Cochrane GET review given that three of the review panel are the researchers behind the key trial that supposedly provides evidence for the efficacy of GET and that these researchers themselves don't consider the Cochrane review was an independent process.

    Cochrane has a policy of changing its findings when new evidence is available
    Other Cochrane principles include:
    * open and transparent communication
    * keeping up-to-date by a commitment to ensure that Cochrane Systematic Reviews are maintained through identification and incorporation of new evidence
    * ensuring quality by ... being open and responsive to criticism

    Can we contact Cochrane to ask for an update on the GET review?
    Yes, it may be easiest to wait until independent analyses of the PACE data is done. But that will take time. And then the Cochrane update will take time. And then updating all the treatment guidelines that rely on the Cochrane review will take time...

    There is plenty of information already that Cochrane should take into account when assessing GET.
    I don't know where to start in contacting Cochrane but I know others will.

    At the very least, drawing Cochrane's attention to this issue now will bring it to top of mind so that when other prompts for an update occur (PACE data reanalysis; CDC update of treatment recommendations), they are more likely to move.
    moosie, actup, Mary and 21 others like this.
  2. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

    Yes, I think it is time to contact Cochrane. An admission by a Professor heavily involved in this school that a review is not independent should be cause for concern for Cochrane.

    Please let me know if I am able to assist in this process.
  3. user9876

    user9876 Senior Member

    There are different things on Cochrane

    There is an "evidence" based meta analysis of GET which includes the PACE trial where they rate PACE as having a high standard. @Tom Kindlon wrote some very good letters pointing out issues and then another patient wrote some further letters pointing out more issues. There responses to the letters are significant because they wont budge on their rating of PACE and in the second set of responses the support PACE in switching outcomes (because PACE claim it was done before data analysis). There response is poor.

    Then there is an old evidence based analysis of CBT

    There is a separate project to look at individual patient data from trials which includes PACE and this is the one that is not independent. There is no claim of independence from Cochrane as they clearly include White, Chadler and Sharpe on the list of authors of the protocol. White and QMUL also funded some of the protocol development (as in funded a meeting).

    It is this latter project that has pace data and is not independent. The significance is pretrial QMUL were saying that independent researchers at Cochrane had access to the data. I think the protocol for this was published some time ago but as far as I have seen no results are out. Although pre-trial AYME claimed that the independent review showed similar results and I assume that came from QMUL.

    The other interesting thing is the person running the individual patient data review is the same person as the one doing the GET review (others are involved in each case) and she was the one supporting outcome switching.

    Coyne had raised issues with the cochrane editor (David Tovey) who only picked up on CoI concerns.
  4. Hutan

    Hutan Senior Member

    New Zealand
    Thanks @user9876. That clarifies things a lot and weakens the case for letters to Cochrane right now.

    Could this Cochrane branded individual patient data study have been dreamed up to pre-emptively head off possible criticism arising from when the Pace data is shared with non-BPS researchers?

    Yes, that is interesting.

    I know some good letters have been sent to Cochrane. Perhaps it is still worth sending off another one or two to alert them to the new Addendum of the AHRQ? I guess having people of influence chat with people like David Tovey has a higher chance of success.
  5. Hope123

    Hope123 Senior Member

    Yes, please write Cochrane. Cochrane's reviews are used by clinicians, governments, health care facilities, worldwide. In particular, they ostensibly value "consumer" (e.g. patient, caregiver, etc.) viewpoints. See the below link; you can even quote from it:

    I have used Cochrane reviews in other areas and have always considered them usefully but this whole ME/CFS fiasco has made me more skeptical. I doubt their ME/CFS reviews have been vetted by patients or caregivers and looking at past reviews, the staff have always consisted of Europeans even though Cochrane is also used in the US.

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