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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"Lancet Flubs PACE Letter: Exposes Journal to Ridicule"

Discussion in 'General ME/CFS News' started by Dolphin, Sep 15, 2016.

  1. Dolphin

    Dolphin Senior Member

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    From Cort Johnson:



    https://goo.gl/NfB8Iq

    i.e.

    http://www.healthrising.org/blog/2016/09/14/lancet-pace-chronic-fatigue-syndrome-ridicule/
     
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  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    What a peculiar set up this is with Lancet.

    1) Publish a paper that uses F48.0 psychiatric fatigue patients, to represent a disease that isn't one (unethical) using treatment that patients with G93.3 ME and CFS claim makes them worse (also unethical).

    2) Paper makes exaggerated claims of therapy effectiveness for this unethical paper. Concerned scientists react to this.

    3) PACE data requested by Scientists and academics, yet requests refused multiple times.

    4) Data ordered to be released by UK court order due to evidence presented by ME patient to protect his own and others health.

    5) Journal does not withdraw the paper now new data shows the therapy effectiveness published, was actually null.(20% 'recovered', but 20-32% met recovery criteria already = zero effect for therapy).

    6) Patient harms continue in society (therapy given to patients is demonstrated fraudulent) .

    Ideally, a high court judge now needs to order the PACE trial paper to be retracted.

    Otherwise it all gets needlessly embarrassing when the inevitable happens, and it's forced to be by a judge.

    How very silly.
     
    Last edited: Sep 16, 2016
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It would have been interesting if Richard Horton had been asked to support the PACE authors in the FOI tribunal. Would he have claimed that the agenda had been highjacked by irresponsible individuals there? Would he have suffered the same blowing of cover that the witness did who made such suggestions?

    It is not clear to me from the Cort piece whether Horton has actually said anything new since the rejection of our letter. Things have moved on. An independent body has ruled that the charge of irresponsible activism is groundless. And the PACE authors' own re-analysis has shown how overinflated the 2011 paper is (and there is more to come). I have not yet seen evidence that Horton has insulted me, as a letter author, but if he has that might be libellous and might deserve some legal advice. I am not prepared to be accused unreasonably of damaging the interests of patients.
     
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  4. worldbackwards

    worldbackwards A unique snowflake

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    Earth
    It would be worth it for the irony though :)
     
  5. Sasha

    Sasha Fine, thank you

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    My thoughts entirely.
     
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  6. eastcoast12

    eastcoast12 Senior Member

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    I still honestly believe I'm in a weird dream sometimes. I mean in this day in age this can't happen right? Like...how?
    Then I remember. $.
    I honestly do t believe how these people walk around around everyday. If for once I thought that I severely hurt a bunch of people and who were bed bound for the rest of they're lives because of me, I'd jump of a fucking building. I wouldn't be able to live with the guilt.
     
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  7. Esther12

    Esther12 Senior Member

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    I suspect he's hoping that to get away with staying quiet at this point.
     
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It's not just $. It is partly shown in my recent nature snap: IMG_5527.jpg
     
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  9. daisybell

    daisybell Senior Member

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    Not quite the same effect with no feathers though......
     
  10. eastcoast12

    eastcoast12 Senior Member

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    We'll the pace authors and that bird walk with their chins equally high. That's for sure
     
  11. JaimeS

    JaimeS Senior Member

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    IMO, part of the reason they don't admit it -- even to themselves.

    No one likes to believe they're a bad person. That they would do such foolish, damaging things for money, or prestige. If we're bad people -- or deluded -- then they can sleep at night. Especially if they are convinced (mostly) that they're doing this all for our own good.

    -J
     
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  12. JES

    JES Senior Member

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    Yeah, they seem to have blind belief in their BPS methods, which then justified them to overinflate the PACE results, for the greater good. That's all it takes and it sadly has happened to other scientists as well, look at the recent Macchiarini scandal for instance.

    This kind of blind belief can have very grief consequences, take 9/11 as an extreme example, where the terrorists most likely did not think of themselves as bad persons, if you had asked them they were the righteous people doing the right thing for their god.
     
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  13. Luther Blissett

    Luther Blissett Senior Member

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    (emphasis added)

    Well that's your problem right there. Some people never stop to think and challenge their assumptions. People spend their whole lives dedicated to working on theories built on wrong assumptions.

    Thinking is dangerous. Thinking leads to doubt, and if you admit doubt, you are admitting you might not know things. Not knowing things and admitting it, means you have not come up with an answer. It is safer in a social position based on knowledge to constantly come up with a series of 'correct answers', that later turn out to be wrong. You just then turn out the next 'correct answer'.

    Also, you seem to be suffering from empathy. I'm sure there's a pill for that. ;)
     
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  14. Michelle

    Michelle Decennial ME/CFS patient

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    This is an issue that I've spent far too much time thinking about the last couple of weeks -- both due to PACE and reading recently a paper published in a reputable social science journal that was also shockingly bad. As a graduate student, I believed that science -- or Science -- was a true meritocracy. Perhaps it just took me this long to realize just how naive this view was because this Damn Disease stole me away from academia while I was in graduate school so it took me a lot longer to become jaded. And perhaps because I didn't get a long career in academia, I am unable to judge if the situation is actually getting worse due to the 24-hour news cycle, the decline of journalism, the Web with its analytics and corporate big whigs insisting on more click bait (which, let's face it, was basically what the Wakefield paper was and Richard Horton has practically admitted so using euphemistic language about "debate"). I dunno. Maybe @Jonathan Edwards can speak more to this. Clearly this problem of mediocre minds producing mediocre (or worse) work is a longstanding problem as even Hans Christian Anderson was so appalled by this phenomenon that he wrote that brilliant story about a naked emperor.

    I was baffled that Horton survived the Wakefield scandal -- especially as Brian Deer's investigation showed that Horton actively colluded with Wakefield et. al in protecting their work from genuine inquiry into whether this was good science. This had truly deadly consequences for which he seems to show no shame. In his comments to the GMC inquiry about Wakefield et. al., Horton made it clear that he is not interested in Science per se, but protecting his colleagues (see relevant quote from Deer's piece in my post at this thread; I also recommend @Chrisb 's post too). In the Wakefield case, these were long-standing colleagues to be sure; he worked with them at Royal Free Hospital before he became editor at the Lancet.Yet now seeing Horton drag the Lancet through the Macchiarini scandal and the PACE trial (which will hopefully become a big scandal outside of our community), he is just reinforcing that he will chose colleagues over Science every damn time. Or click bait. Especially galling coming from a guy who believes he is on the front lines defending Science from dogma and ignorance.

    But I'm realizing that, just as it is true in so many other areas of life so in Science, that it's often about who you know as much as what you know. And charisma covers a multitude of sins.

    And then, of course, there is the issue of our primal need to be right (cheers to @Simon for this thread; could not find the right search term to find that paper on Google or Gscholar). The fact that we will spend our whole lives researching and arguing one thing only to have some upstart come along with new data that proves everything we worked for was wrong. I get how Wessley, White, Sharpe, et. al genuinely believe CBT and GET are right and they're not going to let some random statistical noise deter them from what they believe is the truth. And how hard it must be to admit you've spent your career not just wrong, but actually hurting people. I suppose that's the case for Horton and Wakefield too.

    And yes, money. Building careers. Getting your piece of the bureaucratic budget pie. I suppose at the end of the day, given all our innate cognitive biases it's amazing we get as much good Science done as we do.
     
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  15. Michelle

    Michelle Decennial ME/CFS patient

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    The older I get, the more I believe that doing something for somebody's own good when they don't want you to do it is about the most dangerous motivation possible. I'll take greed and selfishness over do-good-ing any day.
     
    JaimeS, barbc56, flybro and 6 others like this.

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