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Dr Myhill’s complaint to GMC about PACE authors. DEADLINE 25 MARCH

Discussion in 'General ME/CFS News' started by Robert 1973, Jan 15, 2018.

  1. Barry

    Barry Senior Member (Voting Rights)

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    Totally agree. The people I call "the innocently uninformed", of whom there are many, although in many cases perhaps more accurately "the innocently misinformed".
     
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  2. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Ideally we would have more: I would like to see a expert PR/Lobbying/Media offensive such as Valerie Eliot Smith has proposed. If she didn't get anywhere in trying to unite the ME community in the UK towards that I don't think it'll happen though. We're up against big guns and a big gun of our own would make our struggle much more effective. I'm not getting any younger.

    I'm glad to see though that the number of people sending their experience of harms to GMC is rising, and I hope lots more people back her complaint up.
     
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  3. Inara

    Inara Senior Member (Voting Rights)

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    I think without unison - at least to the external world - it won't work. That's just was history and the present show. Every big agenda worked or works due to unison.
    Internally, discussion, fights, different opinions etc. are ok as long as they don't lead to (public) split-ups.

    I agree that a professional PR campaign etc. could be very successful.

    My impression is, we will have to wait for science to give something like a biomarker. IF one will be found.
     
  4. Inara

    Inara Senior Member (Voting Rights)

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    Does anybody know if it's enough to send my experience to Myhill alone? Does she collect all letters? If I contact Sir Stephenson of GMC directly - as she asks - I surely have to take into account some bureaucratical issues, no? I feel a bit uncomfortable with that.
     
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  5. Jan

    Jan Senior Member (Voting Rights)

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    I do think that #ME Action do speak for all of us, and most if not all other groups/charities support what they are doing. If ME Action wanted to fund raise for professional PR support I'm sure most would back them.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    I obviously don't know, and am not asking, the details, but in a way your discomfort feels indicative of some of the indirect ways the PACE trial has led to stress, at the very least, for many PwME.
     
  7. Skycloud

    Skycloud Senior Member (Voting Rights)

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    90 patient letters submitted
     
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  8. Barry

    Barry Senior Member (Voting Rights)

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    It's good, but I would think she really needs lots more. There must be so many people.
     
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  9. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I did mine this morning. Going to re-read it later today before sending it.

    Agree it would be good to have a flood more of them.
     
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  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I think Dr Ms team are looking for volunteers who are more able to help people who are struggling to write up their story.
     
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  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I would get in touch with Craig Robinson not sure if he’s on here
     
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  12. Keela Too

    Keela Too Senior Member (Voting Rights)

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  13. Barry

    Barry Senior Member (Voting Rights)

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  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    2000 signatures
     
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  15. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    @Robert 1973 may be worth changing the title to add
    and petition
    To highlight the petition for those who are interested in supporting this
     
  16. Sasha

    Sasha Senior Member (Voting Rights)

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    If you want to draw attention to a petition I suggest starting a new thread in the 'Petition' subforum.
     
  17. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Update from Craig Robinson on Facebook now 110 letters

     
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  19. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Gosh I can really relate to that statement, as I'm sure so many of us can. Thanks to the person who said that and to everyone else who has submitted their voice.
     
  20. Jan

    Jan Senior Member (Voting Rights)

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    I wonder how many of us avoid talking about ME with GP's and consultants?
     

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