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AFME seeking feedback on NICE

Discussion in 'Advocacy Action Alerts' started by Cinders66, Jul 9, 2018.

  1. TiredSam

    TiredSam Moderator Staff Member

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    Indeed. S4ME and its members are more than capable of responding to NICE without it having to be through an AfME survey.

    On the subject of asking people to respond to a few questions, there are a few unanswered questions around this forum awaiting your attention @Action for M.E.
     
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    But AFMEs stance carries weight, it justified PACE, it can justify a weak modification of the status quo.
     
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  3. TiredSam

    TiredSam Moderator Staff Member

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    AfME seem to be refusing to take a stance. Assigning percentages to the answers of a survey of members (who aren't very well informed if AfME's webpages and the discussions permitted on their forum are all they have to go on) and calling it "data" is a long way from saying "PACE is a pile of crap and the NICE guidelines are unfit for purpose and here is the evidence".
     
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  4. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Actually, we have pushed for the Canadian Criteria/Consensus for years and that's referenced on the Service. https://www.ecch.org/our-services/services/adults-mecfs-team/e provider website. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
     
  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I think it is good AFME are seeking patient feedback. The issue I have as expressed here is the fact that they often don't do a great job at informing in much detail prior to this and seem reluctant to take controversial positions themselves. #MEAction are seeking feedback too.

    I want a complete break from the fatigue and umbrella definition and the way NICE frames it. I don't know who will be arguing for that. I'm concerned that the big charities are happy largely with modifications on GET rather than CFS/ME being redefined as systemic disease, PEM put at the core and nice criteria scrapped.
     
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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