Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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'PACE-GATE: An alternative view on a study with a poor trial protocol' by Bart Stouten in JHP

Discussion in 'Latest ME/CFS Research' started by Yogi, May 12, 2017.

  1. Yogi

    Yogi Senior Member

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    http://journals.sagepub.com/doi/abs/10.1177/1359105317707531?journalCode=hpqa


     
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  2. AndyPR

    AndyPR RIP PR :'(

    Paywall at moment but MEA Facebook page has stated that it will go to open access soon.
     
  3. Yogi

    Yogi Senior Member

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    I didn't understand the bit about influenced by the funding source??

    I like the last bit:
     
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  4. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    @Yogi, I assume your quotes are from behind the paywall. Thanks for giving us a flavour of the article.
     
  5. alex3619

    alex3619 Senior Member

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    My best guess, without further information, is that the people paying for the study were involved in reviewing the study.

    By way of example, with the PACE trial's first two Cochrane reviews something similar appears to have happened. The first one had the PACE authors as reviewers, the second had PD White draft the analysis protocol, at least from my recollection of what came out last year.
     
  6. Snow Leopard

    Snow Leopard Hibernating

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    Exactly.
     
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  7. A.B.

    A.B. Senior Member

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    One could say that the treatment effects are all in the mind :D (of the PACE authors).
     
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  8. panckage

    panckage Senior Member

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    There was a discussion about an insurance organization being involved. Patients considered cured can be kicked off of disability to save the organization money.

    Anybody remember the source for this?
     
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  9. Esther12

    Esther12

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    This is now open access: http://journals.sagepub.com/doi/full/10.1177/1359105317707531

    This piece is critical of PACE, but I wasn't so sure about some of it.

    Have they shown CBT and GET are genuinely effective, if only slightly? I don't think that they have.

    Likert and bimodal scoring of the Chalder Fatigue questionnaire are measuring different things, and I don't think it's right to just assume that likert is a more precise measure of fatigue than bimodal.

    edit: While the Chlader Fatigue Scale is so rubbish it doesn't really matter, I'd suspect that bimodal scoring might be better at mitigating some of the problems with it than likert, and so would be a 'more precise' approach. Maybe looking at PACE data and seeing how likert/bimodal scoring correlates with more objective outcomes could provide some evidence on this?

    I don't really understand why he didn't also use the fitness and employment data that has been released.

    This has been discussed elsewhere, eg: http://www.bmj.com/content/350/bmj.h227/rr-10

    I thought that this was interesting, and I don't think I'd read the earlier BMJ RR he'd written on this:
    http://www.bmj.com/rapid-response/2011/10/30/question-statistical-advisors-bmj

    Yet this seems to be contradicted by the results released in the Larun Cochrane review, supposedly calculated from raw FINE data. It would have been good if this had been mentioned.

    Maybe I'm being overly-critical on this, as my expectation is that this issue should be an easy win for us, but I feel like this paper uneccessarily muddies the water by omitting some important pieces of infomation. As the author cites some of his own comments from 2004, I wondered if maybe he has been paying less attention to issues recenty, and is a bit relying on old knowledge? If I was speaking with the author I would express my gratitude for him writing it, but I didn't think that this was great tbh, and I have some concerns that it gives the PACE authors some valuable tools for their own response.
     
    Last edited: May 18, 2017
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  10. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    I skimmed through it. I think it's a valuable contribution in that it makes clear that the more objective the data is, the more the so called improvements disappear, and cites studies that seemed to show improvement, but once they looked at the actometer data, there was none. This point the finger at PACE for abandoning actometers.
     
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  11. Esther12

    Esther12

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    Yeah, that's true. It's just that this is a point I've seen so many people make more persuasively before that it's a little frustrating that this is the version published in a medical journal.

    The use of only 6mwt data from PACE, ommitting the two other objective outcomes that were null results for CBT and GET, is pretty odd.

    I felt that if a draft of this had been posted on PR for comment we could have helped it be a lot better than it was.
     
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  12. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    True, but we only have the raw data for the walk, not the other two. And only a graph, no figures for the step test. I haven't read the paper closely enough to work out whether the author of this paper used the raw data.
     
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  13. user9876

    user9876 Senior Member

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    I think you are right. More precise suggests it is the same measure and just has more accuracy however, some people got worse with one marking scheme and improved with the other - so I would say that cannot be more precise.
     
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  14. user9876

    user9876 Senior Member

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    Given we have the 6mwt data but not the other measures (with the step test only being reported as a graph) then I'm not surprised he omits them.
     
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  15. Esther12

    Esther12

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    He does refer to other (non-PACE) resulst that we do not have the raw data for, so I'd have thought it would make sense to refer to these results too. Ah well.

    I think I may have been expecting too much when I sat down to read this. I did have some interesting info in it I was not aware of before.
     
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  16. BurnA

    BurnA Senior Member

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    I am not a PACE expert but as time goes by I realise I don't need to be, I know it was unblinded and subjective therefore it's unreliable. I know patient selection criteria was dubious which calls the whole trial into question.

    Sure it's interesting to see just how many different ways they messed it up and twisted things to suit the results they wanted to get, but the more in depth an argument gets, the more it seems like minor details that an outside person might just assume is a difference of opinion.


    Who is to say six minute walking tests 12 months apart is anything to do with ME. Is that question asked anywhere?

    Articles like this are useful to have in our armory but I would be hoping never to need to refer to this paper to convince someone that PACE was flawed.
     
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  17. RogerBlack

    RogerBlack Senior Member

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    The amount you can do once, at picked point in time is relevant.
    Two day walk test (or CPET) would of course be better.
     
  18. BurnA

    BurnA Senior Member

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    Relevant to what though.

    Good days and bad days, natural fluctuations in severity - how are they accounted for.
    How much effort was expended prior to test that day etc.
     
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  19. RogerBlack

    RogerBlack Senior Member

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    For a whole group, with enough people that the averages of both, and the differences between provide robust evidence.
     
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  20. Dolphin

    Dolphin Senior Member

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