AFME seeking feedback on NICE

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.

 

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

 

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".

 

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.

 

The first link isn't working. Can you check it?