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I think a lot of us realise a change to the NICE guidelines isn’t going to of itself result in some kind of root and branch overhaul of how people with ME are dealt with or not dealt with by the NHS @Suffolkres. It is about removing that particular excuse for not changing the status quo. Other...

Apologies if you’re already aware @PhysiosforME tagging just in case you’ve not seen

I like the title. Hopefully some people who assume the answer is yes will read it and have their eyes opened to a different perspective.

Hi @Suffolkres the link to the document doesn’t work for me

Good grief how many questionnaires what’s the protocol on questionnaires. Once it is published is it out there public free access or do researchers have to pay a fee to use it. Can you like a piece of music say you don’t want your questionnaire used in a piece of research. asking as I...

Well done @Tom Kindlon

That would be good if someone has the patience. Not a job for me.

Spot on. Didn’t finish it - ugh

I think it’s a great idea to target fundraising on this project which is pretty significant to inform what happens after the new NICE guidelines come out.

Like @Mithriel i found the set up at my GP surgery for the flu vaccine very well thought out and if I’m invited back there for CV19 jabs I will definitely go. Luckily it is only a mile down the road so within my drive myself capability. I’m assuming all the staff involved in doing the jabs...

Thanks to those who contributed

Good idea. It would also be interesting to see some research into the effects of having to live with ME on those of us who live in single person households.

:wtf: He needs to have a word with himself.

This.

Good news

Why they would think doing this for 15 days just demonstrates how clueless they are before you even get to the specifics :banghead:

Well done. I won’t download the full paper as I prefer to leave access to people with more brain power than me but I really appreciate your work and I found the abstract informative.

Obviously they have their set process. Given some of their stakeholders are long covid patients who will be struggling with the symptoms of the illness they may be failing to fulfil their duty to provide reasonable adjustment by not adapting their consultation process.

What % of the general population has stiffness of cervical muscles. Very common among people who work sat in front of a computer screen.

So if people did better when allowed to sleep undisturbed why push people into so called sleep hygiene dictating when they should and shouldn’t sleep