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Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

Discussion in 'Petitions' started by Andy, Jan 15, 2018.

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  1. Andy

    Andy Committee Member

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    This was created to support @Graham 's open letter, which can be found here, https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/

    https://www.change.org/p/sir-andrew...ommittee-for-me-cfs-is-transparently-unbiased

    ETA: James Coyne has posted supporting it - https://www.coyneoftherealm.com/blo...concerning-the-guideline-committee-for-me-cfs
     
    Last edited: Jan 15, 2018
  2. Graham

    Graham Senior Member (Voting Rights)

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    There's also an introductory video which may be useful: youtu.be/7Y6XFipQigE

    There's going to be a committee, and there's going to be a new set of guidelines, whatever we do. So we need to make an effort to ensure that the committee is balanced, unbiased, and capable of understanding the scientific process. There never has been any evidence that CBT and GET were effective treatments for ME/CFS, quite the opposite in fact, so clearly previous committees were unable to comprehend the nature of scientific reasoning and proof.
     
  3. Andy

    Andy Committee Member

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  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Just signed. The numbers are going up as you look at it.

    1,450.....
     
  5. Inara

    Inara Senior Member (Voting Rights)

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    Thank you very much!!
     
  6. Tilney

    Tilney Established Member

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    Just added myself & husband
     
  7. Andy

    Andy Committee Member

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    Lol, does he know?

    And welcome to S4ME :)
     
  8. Graham

    Graham Senior Member (Voting Rights)

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    Just to be clear, the letter, the petition and even the rhyme were a team effort: the team included @JohnTheJack . But you can blame the video on me, although most of the facts have been culled from others' findings.

    Me, a parasite? No, I'm not even fit enough to be a monosite.
     
  9. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Yes that’s great now over 1800 community coming out in numbers
     
  10. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    :nerd::slugish:

    Nerdy nematode has signed @Andy :thumbup:
     
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  11. Andy

    Andy Committee Member

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  12. Joh

    Joh Senior Member (Voting Rights)

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    Binkie4, MEMarge, JemPD and 20 others like this.
  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Over 2000 now brill
     
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  14. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Excellent balance there @Joh ! Good look of concentration too.

    Nerdy says 'Hi'. He's missed signing things with a group, and got all nostalgic.
     
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  15. Graham

    Graham Senior Member (Voting Rights)

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    Not far to go now to the 250,000 who have been "diagnosed" with various labels, but who end up in the same bucket. Has it been plugged on Twitter yet? I can't Twit, so have no idea.
     
  16. Joh

    Joh Senior Member (Voting Rights)

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    No worries, :slugish: and :emoji_chipmunk: (<-- nearest thing to a dormouse I could find) still work side by side against B(P)S! Watch out Wessely, these two militants have a pen and are going to use it!

    It's also signed by international people, so aim at 17 million signatures! :) I've signed it when I saw it on Twitter, so it was definitely out there (but I don't know how often it was retwited).
     
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    Shared on whatsapp and Facebook and has got to Sweden, France, US so far
     
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  18. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Just saw it hit 2,145....
     
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  19. Graham

    Graham Senior Member (Voting Rights)

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    A thousand in day one. Then two days for the next thousand. Is it going to be three days for the next thousand, or four?
     
  20. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Last one to sign before 3,000 is a rotten egg. :p
     
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