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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Sense about science / PACE: The research that sparked a patient rebellion and challenged medicine

Discussion in 'General ME/CFS News' started by Cheshire, Mar 24, 2016.

  1. Cheshire

    Cheshire Senior Member

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    PACE: The research that sparked a patient rebellion and challenged medicine
    by Rebecca Goldi

    http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
     
    Yogi, catly, Dolphin and 34 others like this.
  2. Keela Too

    Keela Too Sally Burch

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    Looks good. :)
     
    green_monster and Comet like this.
  3. Comet

    Comet I'm Not Imaginary

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  4. BurnA

    BurnA Senior Member

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    Very detailed, David Tulleresque.
     
  5. Cheshire

    Cheshire Senior Member

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    There's also an editorial:

    On PACE
    by Trevor Butterworth

    http://www.stats.org/editorial-on-pace/
     
    catly, Dolphin, ahimsa and 9 others like this.
  6. A.B.

    A.B. Senior Member

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    This is a good article, and quite detailed too, and I think we should thank the author for her work.
     
    catly, Dolphin, Marky90 and 3 others like this.
  7. sarah darwins

    sarah darwins I told you I was ill

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    Absolutely. She seems to have done the legwork. For example:

    Worth noting that this Sense about Science is nothing to do with the UK organisation of the same name, which is a very different beast.
     
  8. Comet

    Comet I'm Not Imaginary

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    http://www.stats.org/editorial-on-pace/

    I have been wondering lately if the PACE data release is really that important. We know the flaws of the study. Do we really need the data to discredit the study? Doesn't it do that all by itself? But how do we educate media/docs/researchers/family/etc?

    My bold.
     
    Mary, Dolphin, Sidereal and 9 others like this.
  9. jimells

    jimells Senior Member

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    No, we don't need the data to discredit the study. Their own words in the abstract of the long-term followup study thoroughly discredits the study:

    http://www.ncbi.nlm.nih.gov/pubmed/26521770
    This needs to be shouted from the rooftops. Instead it has been largely buried and ignored.

    We do need the data to investigate possible fraud by the researchers. If the data reveal evidence of harm that was buried by the researchers, they might need to revise their retirement plans. Think of what happens to pharmaceutical companies when they hide harms from their drugs.
     
  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "P.A.C.E.?
    A DEN OF STIIIIIINKIN' EVIL!
    COVER YOUR NOSE BOO, WE WILL LEAVE NO CREVICE UNTOUCHED!"

    ~
    "SQUEAKY WHEEL GETS THE GREASE!"
    ~
    So Sayeth Minsc & Boo!

    :D


    [​IMG]

    (the gamers will get it I hope, lol)
     
    Zombie_Lurker, Snowdrop and viggster like this.
  11. medfeb

    medfeb Senior Member

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    Looks good...

    Just a check on the following quote from the article
    However, the PACE protocol said
    Oxford defines these psychiatric exclusions:
    And the 2011 PACE publication appears to reflect that. Was this reported differently in one of the other PACE publications or did they somewhere say that primary depression and anxiety were excluded?
     
  12. BurnA

    BurnA Senior Member

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  13. Esther12

    Esther12 Senior Member

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    Sense About Science USA... lets not go giving Tracey Brown and the UK branch any credit for actually looking at the evidence!
     
  14. alex3619

    alex3619 Senior Member

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    They are fighting a rhetorical defence which may go on for many years. If we had the data it would probably be game over, though it would take a fair while for experts to analyze it. The data is a shortcut, its clear history will show the PACE trial was seriously flawed, and nothing will save it.
     
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  15. A.B.

    A.B. Senior Member

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    The data will also let people such as Coyne re-analyze it and show how much bias was introduced by the post-hoc changes to the protocol. I'm sure he would love it. PACE authors would find themselves exposed as manipulative liars with suspicious, no, alarming conflicts of interest.
     
  16. viggster

    viggster Senior Member

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    Yes, at least one of us does! Nice throwback to one of my favorite games.
     
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  17. alex3619

    alex3619 Senior Member

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    How many long term gamers are not fans of Baldurs Gate?
     
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  18. BurnA

    BurnA Senior Member

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    The thing about the data requests is it allows the authors to continue to say we can't release the data due to trial ethics blah blah blah.
    Of course they continue to ignore the flaws in the trial and now the data release becomes the story instead of the trial flaws.

    They wrote to the wall st journal explaining how they have released data to researchers but unfortunately can't release the data any other way blah blah blah.
    The data is a side issue. One worth fighting but even if we get the data and even if it backs up the authors claims the trial is still useless.

    My fear is it might back up the papers claims and the authors would spin such a story saying their paper stands up to scrutiny.
    Even though of course the trial itself is fundamentally flawed.
     
    green_monster likes this.
  19. Comet

    Comet I'm Not Imaginary

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    Yes, agreed. :) I guess my point is that even if we don't get the data, the trial is still seriously flawed and seriously bad science.

    We may never get the data, but we do know many significant flaws in the trial (conflicts of interest, changed objectives, patients worsening in the trial yet still possible to be declared cured, high drop out rate, proper CBT doesn't allow one to say he or she still feels sick even if he or she really does, improper patient inclusion criteria, etc).

    Why aren't those things alone 'game over'? Seems to me that there is no need for a defense to go on for many years when we already know how poorly PACE was executed. Of course, that and a buck or so will get you on the bus. That is, if you can make it to the bus stop...
     
  20. alex3619

    alex3619 Senior Member

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    Because science involves adversarial argument. We have to bring these things to the attention of enough doctors and researchers. If we have proof its rubbish science it does not matter if we cannot get that proof out to others. Science is about communication as well as hypothesis testing.

    Its been very little time as science goes since we had traction on the problems we have been complaining about for up to thirteen years now. The Virology Blog articles are still having an ongoing impact, and more and more science articles are being produced. By increasing the controversy through denying data requests the PACE investigators are actually increasing scrutiny, and more and more of the methodological and other flaws will be seen in the wider scientific community.

    Think of it this way. They know they are in trouble, but there is no central authority to put a stop to the shenanigans. Nor would we want one, because that would be another place that science could be abused. Instead its like the proverbial camel with the massive pile of straw on its back. In the end it will be one tiny straw that collapses the camel, but that piece of straw will be on top of many many other pieces of straw.

    The more controversy there is, the more it will be talked about. The more its talked about the more scientists will see the flaws. Everything they have done lately accelerates the process. There is too much information out there now.

    The only thing that might save them, however improbable, is release of the data. They NEED to show they are above board and did everything right, but that option looks close to absurd.
     
    meadowlark, Dolphin, soti and 9 others like this.

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