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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Stat News: Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

Discussion in 'Latest ME/CFS Research' started by AndyPR, Sep 21, 2016.

  1. AndyPR

    AndyPR Senior Member

    https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

    Wide-ranging article on the preliminary analysis of the released PACE data and the back story to it. First highlighted by @Simon in a separate thread.
     
    valentinelynx, Yogi, Spoons and 31 others like this.
  2. adreno

    adreno PR activist

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    The link to the virology blog analysis is dead.
     
    Jennifer J and Esther12 like this.
  3. AndyPR

    AndyPR Senior Member

    Jennifer J likes this.
  4. trishrhymes

    trishrhymes Senior Member

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    meandthecat, Mary, Jan and 11 others like this.
  5. Sasha

    Sasha Fine, thank you

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    This is a superb article. It's one of the best things I've ever read on ME and the PACE situation, and I've read loads over the years.

    Highly recommend everyone read and share.
     
    meandthecat, Yogi, Mary and 19 others like this.
  6. daisybell

    daisybell Senior Member

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    Great stuff! Heartfelt thanks to all involved.
     
    meandthecat, Yogi, Mary and 10 others like this.
  7. Esther12

    Esther12 Senior Member

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    Personally, I'm not keen on the way it presents patient concerns as stemming from their personal experience of the illness. Maybe it's just because that was not my experience though. I didn't assume that CBT/GET were implausible for myself, it's just that when I looked at the evidence I found a lot of spin and quackery.

    Still lots of other good stuff in there though. Always good to get more from Wessely (so long as it's reported by someone who understands the details).
     
    flybro likes this.
  8. snowathlete

    snowathlete

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    Very good article in every sense. Enjoyed it.
     
    Comet, Daisymay, Mel9 and 4 others like this.
  9. trishrhymes

    trishrhymes Senior Member

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    MEMum, Jennifer J, actup and 4 others like this.
  10. Denise

    Denise Senior Member

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    MEMum, Jennifer J, Comet and 4 others like this.
  11. J.G

    J.G

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    Fantastic article.

    As an aside, I was struck by the image below the article title. That's the first artwork accompanying an ME/CFS article I've seen that profoundly captures the experience of living with it. Deeply moving.
     
    Jan, Comet, Mel9 and 7 others like this.
  12. natasa778

    natasa778 Senior Member

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    excellent, thank you!
     
    Comet, Mel9, Daisymay and 2 others like this.
  13. anciendaze

    anciendaze Senior Member

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    What this shows is that data collected by PACE researchers, when evaluated by their own published criteria, show positive responses at rates which are typical of anecdotal evidence, not a "randomized, controlled trial based on objective measures."

    When positive responses appear at such low rates, and there is a problem with a bias introduced by "available cases", questions about adverse responses become more important. At this point we run into a stone wall. Published data by PACE researchers doesn't even allow anyone to estimate the rate at which any group made trips to emergency departments. We have only the authors' assurances that any such visits, if such occurred, were totally unrelated to PACE therapies.

    Based on my own experience, and that reported by other patients, I find it highly implausible that anyone could have 640 ME/CFS patients in a study for a year without some going to emergency departments. Either they were studying patients with some other condition, or they were ignoring evidence of serious adverse events.
     
    taniaaust1, Jennifer J, Jan and 13 others like this.
  14. mfairma

    mfairma Senior Member

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    Overall, I think this is excellent. The progression from issue to issue was fluid and well done, though I think devoting such little energy to definition undersold one of the most compelling arguments. Hard hitting, though, I agree.
     
    Mel9 and BurnA like this.
  15. Large Donner

    Large Donner Senior Member

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    [QUOTE="anciendaze, post: 765813, member: 794"
    This is something I have thought about in terms of the cohort they used. Now that the PACE trial has been totally discredited there's always the chance that another BPS crowd or the government angle may be, "well we need another PACE trial" now as the last one didn't answer any of the questions about ME and the "science is not settled".

    The last thing we need is a momentum from the likes of the people behind the DWP or insurance companies for a new trial that will take another ten years.

    It fairly obvious that if people are not prepared to stop the MAGNETA trial and the LP trial that Crawley and associates have been given money for that no one in any real authority is understanding the dangers created by the PACE trial.
     
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  16. flybro

    flybro Senior Member

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    pluto
    Exactly my concerns.
     
    Mel9, Daisymay and trishrhymes like this.
  17. Sidereal

    Sidereal Senior Member

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    Great article and I really liked the artwork.
     
    Comet, Mel9, Daisymay and 4 others like this.
  18. anciendaze

    anciendaze Senior Member

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    By the way, there is a big gap between the 3158 referred for treatment by other doctors who thought the patients had "CFS", the 800-900 the PACE authors "intended to treat" and the 640 who completed the trial.

    Can anyone give an explanation that is different from "cherry picking" the patients you are willing to treat?
     
    taniaaust1, actup, A.B. and 4 others like this.
  19. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    Excellent re-analysis. Looking forward to more of this.
     
    Daisymay likes this.
  20. Denise

    Denise Senior Member

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    I received an email today from a contact in the office of one of my senators. My contact noticed mention of the Stat article in a daily health news aggregator and wanted to be sure I had seen it.
     
    taniaaust1, Cheesus, mango and 24 others like this.

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