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S4ME is looking for another representative for the NICE ME/CFS Guidelines review process

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Mar 24, 2018.

  1. Andy

    Andy Committee Member

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    Posted elsewhere but creating a new thread for maximum visibility.

    Each stakeholder organisation is able to put forward two representatives again, currently S4ME only has Jo Edwards to represent us, so is there anybody who wants to go as our second rep? We would expect our rep to support the position that anything to be included in the guidelines should be supported with adequate evidence, which obviously attacks the foundations for CBT and GET but unfortunately doesn't allow us to support any treatments at the moment.

    The next workshop will be held Friday 25 May 2018, 10:00 – 13:00 at Avonmouth House, 6 Avonmouth Street, London, SE1 6NX and ideally I want to inform NICE who are reps are by the end of this month. Existing thread on the workshop here, https://s4me.info/threads/nice-me-cfs-guideline-stakeholder-scoping-workshop-fri-25th-may-2018.3029/

    Please also note that as you would be representing S4ME the committee will have final say on acceptance as our rep.

    Those still interested either post here or PM me.

    Thanks :)
     
    Milo, Kalliope, Inara and 14 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Bump, in case you haven;t found someone yet.
     
  3. Andy

    Andy Committee Member

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    Thanks. Nobody has stepped forward yet.
     
  4. Alvin

    Alvin Senior Member (Voting Rights)

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    Wrong side of planet or i would love to volunteer :(
     
  5. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Hi @Andy I am happy to volunteer to attend the scoping workshop if the committee think I would be suitable
     
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  6. Andy

    Andy Committee Member

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    Wonderful, thanks. I'll PM you.
     
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  7. Sbag

    Sbag Senior Member (Voting Rights)

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    What about inviting William Weir or Malcolm Hooper if they do not already attend
     
  8. Trish

    Trish Moderator Staff Member

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    The point is to appoint people who are there to represent S4ME, ie are active members.
     
  9. strategist

    strategist Senior Member (Voting Rights)

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    @Lucibee is this something you're interested in?
     
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  10. Sbag

    Sbag Senior Member (Voting Rights)

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    Yes sorry I meant ask them to join the forum as well. But I get that that would be a bit backwards!
     
  11. Graham

    Graham Senior Member (Voting Rights)

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    I'd like to support ME Marge's offer to be a member. I know you aren't looking for votes or anything yet, but I know her well enough to value her contributions: as a carer she has the understanding, but also doesn't get brainfog: and she is a determined lady!
     
  12. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I think @MEMarge would be great too. No pressure though :thumbup:

    I second the motion
     
    Last edited: Mar 29, 2018
  13. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Me too. MeMarge thirded.
     
  14. Graham

    Graham Senior Member (Voting Rights)

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    I don't want to see MEMarge thirded. She's much too nice a person for that to happen.

    So please explain: first, second, third, fourth, fifth versus whole, half, third, quarter, fifth: what idiotic counting system set up that confusion?
     
  15. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    duly edited :thumbup:
     
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  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Am sorry if I have caused confusion. I meant to support MeMarge as the second representative of S4ME. Terminology supposed to be slightly amusing. Obviously it missed its aim.
    Just to be clear- I join with @Graham and@arewenearlythereyet in supporting MeMarge as S4ME representative.
     
  17. Graham

    Graham Senior Member (Voting Rights)

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    No, no, @Binkie4 , your comment was perfectly understandable and amusing. This is just another tedious example of my weird sense of humour. I need to explain here that I was a maths teacher, and we are trained to be weird. Obviously, some people escape through the net and remain normal (don't they @Trish ?), but I'm a lost cause.

    Some people say it takes a long time to get used to me. Others describe that as a process of losing touch with reality. My family would say - don't even try.
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    I have a pet saying: You have to be a little bit mad to stay sane. I think a weird sense of humour fits perfectly with that, especially when attached to a lost cause :D. (That's a compliment by the way, in my world anyway).
     
  19. Trish

    Trish Moderator Staff Member

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    What, me? Normal? No thanks, far too boring.
     
  20. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Soooooo.....glad @Graham.
    I liked maths at school and maths teachers. No doubt given more of a chance, I would learn to understand your humour. I quite like weirdness. Not that you have ever seemed weird to me.
     

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