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UK: Priority Setting Partnership for ME/CFS

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Mar 10, 2020.

  1. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Is this limited to UK residents? I have tried asking those involved via various (online & email) means and have yet to receive any replies at all.
     
    MSEsperanza, MEMarge, Kitty and 6 others like this.
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    One thing AFME Sam said on Facebook was they were open to suggestions of clinicians to get involved. The problem is , with newton presumably not allowed as a researcher, who are the good CFS clinicians?
     
    Kitty and ladycatlover like this.
  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I would imagine so.
     
    Kitty likes this.
  4. Andy

    Andy Committee Member

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    Not that I have any additional knowledge but I don't think it should be. As I understand it, patient input can come from anywhere. The Steering Group might be as the application pack does talk about face to face meetings.
     
    Kitty and MEMarge like this.
  5. Andy

    Andy Committee Member

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    MEMarge, Kitty and Dolphin like this.
  6. Andy

    Andy Committee Member

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    Following a forum vote that closed earlier today, @MEMarge has been confirmed as the official S4ME representative on the Priority Setting Partnership's Steering Group.
     
  7. JemPD

    JemPD Senior Member (Voting Rights)

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  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Membership of the steering group is limited to UK residents over 18.

    I will find out whether answering the survey is restricted to UK residents. I know they monitor the URLs to ensure that the same address is not being used to give "hundreds" of replies.
     
    Last edited: Jun 21, 2020
    Kitty, MSEsperanza, Amw66 and 4 others like this.
  9. Andy

    Andy Committee Member

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  10. JellyBabyKid

    JellyBabyKid Senior Member (Voting Rights)

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    Clicking on the tweet leads to a message that says "this tweet is from an account that has been suspended"
     
  11. Andy

    Andy Committee Member

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    OK, thanks, I've passed that on.
     
  12. Andy

    Andy Committee Member

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  13. Andy

    Andy Committee Member

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    Location:
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    No published information on the steering group members yet.
     
    Kitty, Trish and Invisible Woman like this.
  15. Andy

    Andy Committee Member

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    From the article
     
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  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes I’ve checked the website nothing on there yet.
     
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  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    It is a great group: 4 clinicians who understand the reality of ME, 4 carers and 4 people with ME themselves. A few are members here.

    We did have a great set of applicants, which has made it easier to recruit an excellent team.

    The BPS/BACME promoters were notable by their lack of applications .....?
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Perhaps they're confident that, whatever the research priorities are, they'll be the ones who get funding to pursue them?
     
  19. Andy

    Andy Committee Member

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    Or perhaps they realise that there is easier prey elsewhere nowadays, so are looking elsewhere? After all, they didn't get £3.2m recently.
     
    Simbindi, cfsandmore, obeat and 9 others like this.
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    Could be, though moving them on to easier prey is a bit tragic for the easier prey. Given the questionable way patients can be given diagnoses like PPS, FND, etc, it could also turn out that we end up being the easier prey in the long-run too. Hopefully we might be able to raise standards in a way that gets rid of the predators.
     
    Simbindi, MEMarge, cfsandmore and 5 others like this.

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