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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James Coyne to talk in Edinburgh Monday 16 Nov 2015 7pm

Discussion in 'Upcoming ME/CFS Events' started by Scarecrow, Nov 6, 2015.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    On Twitter, in case anyone wants to RT:
     
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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    On Twitter, in case anyone wants to RT:

    Facebook: https://www.facebook.com/photo.php?....274636879297512.61710.100002536068526&type=3
     
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  3. lnester7

    lnester7 Seven

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    Did you see the slide Show? This guy is my hero.

    But when the paper is retracted how to undo all the damage done???
     
  4. Simon

    Simon

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    Only just managed to read the transcript (saw the slides a while back) - and what a brilliant talk! Some personal highlights.

    Why "citizen scientists" are important

    Appealing to researchers who don't care about mecfs, but do care about good science:

    PACE as a game changer
    To me, this is a really important point. PACE was set up to explicitly test the idea that whatever triggered mecfs, it was perpetuated by patients' fautly beliefs and behaviours. And CBT/GET was designed to tackle those flawed beliefs and behaviours, using therapies honed with decades of collective clinical experience. Yet PACE did not deliver, which asks major questions about the underlying theories.


    Valuing troublemakers: Coyne was honoured for being a useful pain in the ass
    Thanks again to those who produced the transcirpt
     
    Last edited: Dec 13, 2015
  5. Tom Kindlon

    Tom Kindlon Senior Member

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    Update:
    Edited version: 1423
    Full version: 753
     
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  6. Sean

    Sean Senior Member

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    This is what we need to get people outside of our community to understand. This goes way past just PACE or ME/CFS.

    What the likes of Wessely & Co have done is co-opt and prejudice the entire power structure in the UK to their ends, so it is almost impossible for anybody with a different view to be heard and taken seriously, at any level. Especially patients.

    They have turned a whole society against us, and successfully portrayed themselves as both the victims and heroes of it all.

    You gotta admit, it's a brilliant propaganda coup, a masterclass even.

    But that is all it is, propaganda, and propaganda's great weakness is that it can't be sustained forever, eventually reality will force its way back into the picture. The null result from the 2.5 year follow-up paper, for example.
     
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  7. Sasha

    Sasha Fine, thank you

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    @Scarecrow


    :balloons::balloons::balloons:
     
  8. worldbackwards

    worldbackwards A unique snowflake

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    And yet, and yet...wasn't it interesting the way everyone simply walked around it and pretended it wasn't there. A reality had been created - "the treatments were more effective than the other groups at follow up." The authors liked this reality, the media liked this reality (or at least weren't prepared to look beyond it), it fitted with what everyone had already been told - it was comforting. So the fact that it wasn't actually true didn't matter. The world simply sailed on oblivious.

    And if patients say that it isn't true...well, that's what patients always say, isn't it. Everyone knows you can't trust ME patients, they don't really...understand what's happening here like the professors do, the reassuring figures from Oxford University and Queen Mary's. The fact that it was there in bold black and white just missed everybody completely. It's like a parallel universe has taken over our reality track, with the real world held back through the sheer force of will of the trial authors.

    Anyone wishing to understand the way that ME is portrayed in the UK could do a lot worse than reading the novels of Philip K Dick as a primer.
     
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  9. Sasha

    Sasha Fine, thank you

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    600 more!



    @Scarecrow
     
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  10. geraldt52

    geraldt52 Senior Member

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    Everyone, including the US CDC, who've been validating the BS for years. Nonsense on its face, yet obviously no one at the CDC bothered to read it before promoting it. The personification of useless government "employees", probably spending their days figuring how many of their sick days they'll be able to use to retire early...
     
  11. Sasha

    Sasha Fine, thank you

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    @Scarecrow :woot:
     

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