AFME seeking feedback on NICE

Andy said:
Or you can check our members comments on the different sections of the draft scope in these threads.
Section 1. Why the guideline is needed. - https://www.s4me.info/threads/membe...-the-nice-me-cfs-guidelines-draft-scope.4814/
Section 2. Who the guideline is for. - https://www.s4me.info/threads/membe...-the-nice-me-cfs-guidelines-draft-scope.4815/
Section 3. What the guideline will cover - https://www.s4me.info/threads/membe...-the-nice-me-cfs-guidelines-draft-scope.4816/
We will be incorporating these into our own response to NICE.
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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.
 
TiredSam said:
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.
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But AFMEs stance carries weight, it justified PACE, it can justify a weak modification of the status quo.
 
Cinders66 said:
But AFMEs stance carries weight, it justified PACE, it can justify a weak modification of the status quo.
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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".
 
Cinders66 said:
TBH I think there is as AFME have the stance of ME=CFS, don't commit to any criteria or discuss these issues and we know that Drs are diagnosing broadly and Misdiagnosing too. NICE guidelines are requiring fatigue, PEF and sleep issues to be called ME. The Suffolk service discussed elsewhere was diagnosing via Fukuda, with perhaps optional PEM. Given what MEA present, more science, more discussion on name criteria suitability, I think the ME Patients are likely to self identify with them if they meet stricter criteria. There are people on AFME Facebook who say everyone can get better like they have, refusing to let the illness beat you is important, LP or pushing on worked for them etc. That isn't ME or informed patients
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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
 
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.
 
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