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Well they have ME listed so I filled it in i think important to feed in to highlight the absence of support compared to other conditions

No they’re not because in their eminent opinions the emperor really is wearing a marvellous suit of new clothes, and if they keep insisting us plebs might believe them

Struck me that a change to the title would improve the accuracy of this piece Care for people with CFS/ME - based on evidence which is low/very low quality

Clinical assessment = filling in their BS questionnaires and having an appointment with a physio or ot where you basically go over the questionnaire again

They must be better at filling in the questionnaires

The term would need to be clearly explained to avoid any misinterpretation.

Spot on

Donated ME Research U.K.

Attemp to rehabilitate reputations…….

Well done to the author. I get that it is an academic piece and the language is pitched at their academic tutors for the purpose of getting a PhD this isn’t a criticism of the individual but my reaction is always why can’t these groups use straightforward language.

Agreed. Before this i would have said they could have tested the reaction to a prospective patron by having an article about their involvement in the ME community in the magazine and seeing how people responded. Given the issues this time I think they probably do need a more formal approach to...

Is it time? No it is NOT.

I spotted that the petition has gone over 22,000 been very slow recently but still the biggest number on a U.K. ME petition I think. https://www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now

It would be worth searching the forum we’ve had quite a few discussions of questionnaires.

I’m going to say it. That questionnaire is Tripe.

Seriously why do they keep using the Chalder quiz :banghead:

I’ve not seen any update following the Trustees discussion on Monday has anyone else spotted anything?

Yes I also did. Lightweight and warm when it needs to be but not excessively hot.

Agree strongly with this. I’m hoping she will pursue this. I posted here about her intervention and the impact on DHSc https://www.s4me.info/threads/house-of-lords-govt-discussions-with-nice-on-me-cfs-main-chamber-tuesday-12-october-2021.22424/page-2#post-380744

Yes indeed there was a feeling of a warning shot across the bows from the session.