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UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

Discussion in 'General ME/CFS news' started by Andy, Apr 8, 2019.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    Would be interesting to know if any one applying for this had been informed of the project prior to the public release.
     
    Tilly, ukxmrv, Barry and 7 others like this.
  2. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    I said earlier I'd bet dollars to donuts one group has known about it and will have been preparing and will get the contract.

    This is just a public relations exercise.
     
  3. Barry

    Barry Senior Member (Voting Rights)

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    Or a mother.
     
    ScottTriGuy likes this.
  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    There's a misogynistic streak through all of this.
     
    Gecko, Tilly, ScottTriGuy and 2 others like this.
  5. Amw66

    Amw66 Senior Member (Voting Rights)

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  6. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Location:
    UK
    Barry, Trish and Andy like this.
  7. Barry

    Barry Senior Member (Voting Rights)

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  8. Andy

    Andy Committee Member

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    Location:
    Hampshire, UK
  9. Tilly

    Tilly Senior Member (Voting Rights)

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    Do we know if anyone has put themselves forward and were rejected?

    I did write in with my concerns about this and am now writing to the Family Courts as this is where families end up in when accused. The problem with Family courts are that they are secret and no figures are held of those accused and turn out to be false with some which are false having children taken away similar to Ean Proctor.

    The was a call for the Family Courts to be open but that was rejected this week by May.

    Journalist are not even allowed to report and the mothers a afraid of having reporters in there as this can go against them.
     
    Barry, Amw66 and Nellie like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    Not read it all, but like this bit ...
     
  11. Tilly

    Tilly Senior Member (Voting Rights)

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    Do you think they listened ??? I made that point and also advised that those that could not explain Me and PEM should be excluded including those who wrote the BACME severe booklet.
     
    Amw66 and Barry like this.
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    @Suffolkres, this may be of interest:
     
  13. Tilly

    Tilly Senior Member (Voting Rights)

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    Whoop whoop that is what we need. Now just have to sort out the courts, my letter is now on the way :thumbsup:.
     
    MEMarge, Amw66, Trish and 1 other person like this.
  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    1,522
    They said from the outset that it was needed for people providing input into education, but would RCP/NICE would not consider securing a professional who was involved in that capacity.....( like me!)
     
    Last edited: May 18, 2019
    MEMarge likes this.
  15. Andy

    Andy Committee Member

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    Location:
    Hampshire, UK
    Email from NICE

    Dear stakeholders,​

    This is the second call for a project to support the development of the NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

    The NGC are inviting researchers to tender for the following project:

    · Involving children and young people in developing a NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome diagnosis and management

    All the information about the project including how to submit your proposal can be found at the link below:

    https://www.rcplondon.ac.uk/ngc-guideline-development

    Please note the deadline for any proposal submissions is 12 noon on Monday 10th June 2019.​
     
  16. rvallee

    rvallee Senior Member (Voting Rights)

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    12,290
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    From the recruitment document:
     
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  17. Tilly

    Tilly Senior Member (Voting Rights)

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    350
    Have we heard of anyone putting themselves forward and being rejected?
     
    Esther12, rvallee and ladycatlover like this.
  18. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    I imagine that we won't be told anything until they appoint an organisation. But I don't know. I can imagine that you're worried as a parent. I would be in your shoes too. :hug: Perhaps someone else here knows better, I'm sure they'll get back to you if they do. I'm just hoping it isn't AfME when we find out.
     
    MEMarge and NelliePledge like this.
  19. Andy

    Andy Committee Member

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    Location:
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    Received this email earlier
    Suggests, at least to me, that they haven't received many, if any, submissions.
     
    MEMarge, rvallee, Wonko and 2 others like this.
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    The way they've acted so far means that patient groups are (rightly) going to be wary of doing anything that could be seen as legitimising NICE's work. Maybe that's part of the problem?
     
    MEMarge, rvallee and ladycatlover like this.

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