Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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A response to Professor Esther Crawley’s broadcast on BBC Radio Bristol

Discussion in 'General ME/CFS News' started by Daisymay, Nov 7, 2016.

  1. Daisymay

    Daisymay Senior Member

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  2. Gijs

    Gijs Senior Member

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    It is like Esther Crawley is saying the earth is still flat, really!
     
  3. Countrygirl

    Countrygirl Senior Member

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    UK
    A stunning piece of work!

    Thank you Margaret.
     
  4. trishrhymes

    trishrhymes Senior Member

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    Brilliant paper. Spells out in chilling detail the awful danger and waste of money that is EC and her FITNET fiasco.

    Hard to read as an ME sufferer because it lays out loads of stuff that's going horribly wrong in our bodies which I find scary reading all at once. Makes me wish it was just de-conditioning and I could exerclse my way to health.:ill:

    Seriously though, how can we make use of this?

    No government body is going to even look at it. It would need full referencing for all the biomedical studies it draws on, and I think most of them were quite small, so will be dismissed in EC's chilling way as not sufficient evidence.

    We can all read and agree with it. It's so well put together and clear to us, because we know the full story. Who else will see it?
     
    Hilary, Hutan, A.B. and 6 others like this.
  5. Esther12

    Esther12 Senior Member

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    I find that sometimes Margaret William's writing can stretch things in a way that means that some of the claims she makes aren't as exciting as she makes them sound.

    eg in that piece, this 'condemnation' of GET:

    It's not much of a condemnation really:

    I do find useful and interesting things in what she's written, but when so many patients are so rightly angry about these thing I worry that any sort of exaggeration can end up blowing up in our faces. IMO things are bad enough that we can safely downplay the problems we face and it will still sound terrible!
     
  6. Woolie

    Woolie Senior Member

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    I must not tell lies!
    Dolores_Jane_Umbridge.jpg
     
  7. Yogi

    Yogi Senior Member

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    @Daisymay Hi is it possible to PM you? I tried to do so but could not.
     

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