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Dr Myhill’s complaint to GMC about PACE authors.

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

  1. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    Totally agree. The people I call "the innocently uninformed", of whom there are many, although in many cases perhaps more accurately "the innocently misinformed".
     
    MEMarge, Dr Carrot, Louie41 and 6 others like this.
  2. Skycloud

    Skycloud Senior Member (Voting Rights)

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    2,187
    Location:
    UK

    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.
     
    Annamaria, Binkie4, MEMarge and 7 others like this.
  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.
     
    Annamaria, MEMarge, Louie41 and 3 others like this.
  4. Inara

    Inara Senior Member (Voting Rights)

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    2,734
    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.
     
    Annamaria, Barry and Louie41 like this.
  5. Jan

    Jan Senior Member (Voting Rights)

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    498
    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.
     
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    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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    2,187
    Location:
    UK
    90 patient letters submitted
     
  8. Barry

    Barry Senior Member (Voting Rights)

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    8,385
    It's good, but I would think she really needs lots more. There must be so many people.
     
    Annamaria, MEMarge, Jan and 5 others like this.
  9. Keela Too

    Keela Too Senior Member (Voting Rights)

    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.
     
    Binkie4, MEMarge, Jan and 6 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
    I think Dr Ms team are looking for volunteers who are more able to help people who are struggling to write up their story.
     
    Annamaria, MEMarge, Jan and 4 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
    I would get in touch with Craig Robinson not sure if he’s on here
     
  12. Keela Too

    Keela Too Senior Member (Voting Rights)

  13. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
  14. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
  15. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
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    Location:
    UK West Midlands
    @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)

    Messages:
    3,768
    Location:
    UK
    If you want to draw attention to a petition I suggest starting a new thread in the 'Petition' subforum.
     
  17. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
    Almost 3300 now
     
  18. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,140
    Location:
    UK West Midlands
    Update from Craig Robinson on Facebook now 110 letters

     
    MEMarge, Jan, Indigophoton and 4 others like this.
  19. Daisymay

    Daisymay Senior Member (Voting Rights)

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    682
    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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    498
    I wonder how many of us avoid talking about ME with GP's and consultants?
     

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