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Cochrane Review protocol: Exercise therapy for chronic fatigue syndrome (individual patient data)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 6, 2014.

  1. Dolphin

    Dolphin Senior Member

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    The full text is available for free at:
    http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full

  2. Dolphin

    Dolphin Senior Member

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    It seems unsatisfactory to me that investigators who represent a large chunk of the trials that have been done e.g. four out of the five GET studies in the last Cochrane Review of GET (not individual data), are the reviewers.
    beaker, WillowJ, alex3619 and 4 others like this.
  3. medfeb

    medfeb Senior Member

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    Thanks for this, Dolphin

    Just to clarify - is this saying that the people identified above will be the ones reviewing the evidence for efficacy of GET in CFS?
  4. Dolphin

    Dolphin Senior Member

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    Yes
  5. Tom Kindlon

    Tom Kindlon Senior Member

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    Some people on Facebook couldn't get the full text for some reason, so I've uploaded it here.
    WillowJ and Valentijn like this.
  6. Kati

    Kati Patient in training

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    For crying out loud.

    The Cochrane Library is one of the most respected tool for all diseases around the world.that is except for ME.
    When I wrote to the Canadian Institutes for Health Research asking for funding and research for ME, the CEO pointed out to me that the Cochrane Library was very clear about CBT and GEt as the only treatments for ME.

    This is what we are facing, day after day, after day.

    How can we fight this, in your opinion, @Tom Kindlon ? Everyone?
    Can the Workwell foundation ans IACFSME fight this, do they want to, can they?
    Last edited: Apr 7, 2014
    beaker, Min and Valentijn like this.
  7. biophile

    biophile Places I'd rather be.

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    http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full

    There is no mention of actigraphy, the objective measure which in previous trials has debunked claims made about GET increasing exercise and activity levels. This data will be ignored in their attempts at accounting for outcomes reporting bias, and is inconvenient when trying to make the following unsupported claims which they have been making for years:

  8. Dolphin

    Dolphin Senior Member

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    I agree such data would be very useful. However was it collected for many exercise therapy trials as an outcome measure? The only one that comes to mind is Jason et al (2007). It would of course be good if any such data was reported. Previous Cochrane reviews have reported data on particular measures from only one trial.
  9. Dolphin

    Dolphin Senior Member

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    I recall one or two studies which found that activity didn't vary any more in ME/CFS patients compared to healthy people when looking at day-to-day fluctuations.

    Plenty of studies with deconditioned controls suggest the abnormalities can't be explained by deconditioning.
    Last edited: Apr 6, 2014
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  10. biophile

    biophile Places I'd rather be.

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    Good point. The answer is probably no. However, the several CBT trials which did use actigraphy also incorporated GET into the program. It just seems that every year the tools to measure presumed treatment effects get more complicated and the house of cards grows ever higher without these people ever considering that they are mostly measuring the methodological artifacts of placebo response and patient reporting bias while objective outcomes do not improve yet presumed to.
    Min, A.B., Valentijn and 1 other person like this.
  11. Dolphin

    Dolphin Senior Member

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    I haven't looked at it (the protocol) yet. It would be good if different types of exercise weren't all collapsed into one group. The third approach, which involves pacing, was used in Wallman et al.
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  12. kaffiend

    kaffiend Senior Member

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    Inexpensive GPS activity monitors are widely available for dogs. Unfortunately they'll keep rooting through the existing pile of dung (completed GET/CBT studies) for the time being, but I can't see the lack of objective data being acceptable much longer.
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  13. Dolphin

    Dolphin Senior Member

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    Saw somebody highlight the following:


    Here's some info on conflict of interest in Cochrane reviews. (Note that they state the policy is being revised.)

    Some of the bits that may be relevant to this review:

    biophile, Valentijn and Bob like this.
  14. SOC

    SOC Moderator and Senior Member

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    "Unsatisfactory" is hardly the word for it. I'd go with "unethical" or "incestuous".
    mango, ukxmrv, greebo and 3 others like this.
  15. dancer

    dancer Senior Member

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    I'm just boggling that the document says the group is called:

    "Editorial Group: Cochrane Depression, Anxiety and Neurosis Group"
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  16. Sean

    Sean Senior Member

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    And even that is being generous.

    How much more blatant is this rigging going to get? White, Sharpe, and Chalder, three of the most partisan and vested interest soaked players in the game, get to review their own highly contentious and dodgy work? What next? They get to review their own funding grant applications? Salary levels? Suitability for sainthood?

    Very, very disappointed in and angry with Cochrane. Massive fail from every angle. How can they possibly justify using those three as reviewers? They are the last three anybody should consider for this crucial task.

    It seems – surprise, surprise, – quite clear that this review team are going to frame the whole thing as psychosomatic from the start, and ignore any evidence to the contrary. Like they have since forever.

    Make no mistake: If, as is likely, this comes out in favour of GET, and for the usual bullshit reasons, then we are in deep shit. It will be used to beat us into submission.

    Un-effing-believable.
    Last edited: Apr 7, 2014
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  17. Bob

    Bob

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    I think we need to list all the papers that each of these authors has been involved with that investigated exercise therapy for CFS, list the nature of their current employment, and list all their past and recently declared conflicts of interest, to create a database of COIs to submit to Cochrane.
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  18. Valentijn

    Valentijn Activity Level: 3

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    I don't think the more obvious names are the only problem. For example, Paul Glasziou has not been directly involved in CFS research, but often cites it as an example where exercise, as a non-pharmaceutical intervention, is successful. He seems to see it as useful for pretty much any problem, but mentions it in the context of CFS several times in his research, with no trace of doubt regarding the claims of effectiveness:
    Exercise guides needed (CFS): https://www.mja.com.au/system/files/issues/191_02_200709/gla10407_fm.pdf
    Effect of disease names (ME v CFS): http://www.biomedcentral.com/1472-6920/12/19
    Exercise reduces CFS fatigue: http://www.crebp.net.au/can-we-do-better-at-prescribing-exercise-in-primary-care/
    Exercise is effective for CFS but underused: http://mdm.sagepub.com/content/32/1/E20.full

    So while he's not really been a propagator of the GET-for-CFS party line, he's definitely an unquestioning believer in that dogma, and frequently uses it as an example.
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  19. Cheshire

    Cheshire Senior Member

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    So more or less Oxford criteria...
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  20. Valentijn

    Valentijn Activity Level: 3

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    Alison Wearden is a fairly well-known member of the BPS school, and was the principal author of the FINE trial. Here's some other stuff directly involving and/or referencing her research and beliefs about exercise and CFS (mostly or all Oxford):
    GET is effective, maximal exertion is harmless: http://bjsm.bmj.com/content/33/5/352.full.pdf html
    GET is effective: http://bjp.rcpsych.org/content/172/6/485.short
    Pragmatic Rehabilitation (CBT/GET) reduces fatigue: http://www.bmj.com/content/340/bmj.c1777.long
    FINE, a trial of CBT/GET: link.springer.com/content/pdf/10.1186%2F1741-7015-4-9.pdf
    GET is proven effective in specialist settings: http://chi.sagepub.com/content/2/2/143.short
    GET in CFS: http://bjp.rcpsych.org/content/201/3/227.full.pdf html
    Pragmatic Rehabilitation improves fatigue and beliefs but not exercise capacity: http://psycnet.apa.org/journals/ccp/81/5/831/

    At least one of her papers seems to acknowledge that GET doesn't improve objective physical ability, but she doesn't have a problem with that. As long as people say they feel slightly less fatigued on questionnaires, that's good enough! Basically a hard-core proponent of psychological CFS theories, but seems less inclined to spin results than other members.
    Sea, Bob, SOC and 4 others like this.

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