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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.

disagree it was a waste of time that Minister now has ME/CFS guidelines embedded as an issue in his memory due to the mauling he got from the Baronesses

I’d like to big up these Baronesses for standing up. Unlike previous experiences in the Lords when Wessely got his mates to speak against us. ETA just watched it on BBC iplayer so it’s available if anyone missed it

I would hope that if the minister has anything about him he will understand how poor his briefing and line to take has been and will be kicking ass back in the department

Excellent intervention from Baroness Finlay of Glandaff. ETA that will be causing some thought in the relevant Department of Health policy team and whoever in NHS is responsible for liaison with them. if they are doing their job properly they will be researching what her issue about reporting...

Trying to do as much as possible at the person’s home - the work the Biobank and Physios for ME doing sets an example

Maybe it will get another boost in signatures

‘Focus on health promoting micro changes instead of symptoms’ my backside :wtf::wtf::wtf::wtf:

I think people with ME who may have had some elements of supportive care from individuals within the current structure make that known. The charities also have contact with NHS people and see them as doing their best. Shuffling deckchairs will not get us to a functioning service for PWME

Yes good point.