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This is very severe M.E clearly.

Both the ME association and the 25% group have Dr Speight as an advisor, with extensive experience in managing very severe cases. [A named patient's] own Dr is Dr Weir, so ditto. Action for ME has Dr Strain, who wrote the mysterious “for our eyes only” severe m.e care guide. I don’t think the...

Given how things have gone, I'm pleased Tessa Munt has taken over chairing the APPG. Running 2 groups in parallel, in my opinion as above, couldn't work & having an outspoken Liberal Democrat as chair, when Labour MPs & the APPG seem reluctant to challenge the Labour gvt, can imo only be an...

"NHS England ensures that ICBs follow NICE guidance through a combination of statutory oversight frameworks, annual performance assessments, and local clinical governance requirements". Isn't this nonsense, when NHS England didn't apparently even know what the service provision was & did...

There was not one answer given but several suggestions. However, I have deleted the screenshots and changed the post to AI gave some interesting suggestions as to why the ME community can get a seemingly pointless 48 hours notice about APPG AGMs but i do not have capacity to investigate the...

We have no information given. I just thought this covered a few bases to give some explanation of the otherwise puzzling.

Ai may provide some explanation as to the short notice for the ME APPG meetings which we get sometimes - i found Gemini AI gave some interesting suggestions, as well as agreeing 48 hours was generally too short notice. But do not have capacity to investigate the sources currently.

how much notice should be given for appg agms

3pm 19th January advance notice of AGM Wednesday 21st

Yes,People have stated the same for m.e. Great minds can devise great ways to overcome massive challenges. Dr Charles Shepherd has Indicated - finally- that what is lacking is will. However we / they exert no pressure on “the powers that be “ to find any will

They could just specify biomedical research? the gvt & Medical Research Council could have released a funding call any time in history, as it had done for long covid in 2021 (welcomed by Chris Whitty), but in 2022 it could have been based on the ten priorities in the JLA PSP, which Action for...

Good observation, which should trigger next level advocacy, except our UK charities unlike many others, do not run campaigns and do not have plan b for when collaboration and docile negotiations fail, which they have. Even the short lived research hub campaign was half-hearted. What was the...

MEA comment on the questions and the nature of the answers, looks like there is no plan b if pointless ping pong doesn't deliver.

I have doubts that raising parliamentary questions and getting copy and paste answers is sufficient to drive any reasonable progress? Essentially we have had the door shut in our face and adopted the counter policy of asking nicely can we be let it as they repeatedly shout no. There’s no...

Thanks for sharing, that’s regrettable.

‪I have very severe/ extreme m.e & had a severe kidney infection as a result of kidney stones &was In hospital for about a week. The doctors were a bit off at start, but after the bloods came back said “oh you were quite poorly weren’t you” , so there were markers of bad infection, but for me...

. You seem to assume everyone has a wrap-around family (or a nurse) on hand for emotional support or care, which is a rosy view. There can be great unmet need, or deeper issues where a counsellor or clinical psychologist might be better. My profound cognitive deficits make just "being"...

I thought that they were mainly OTs? I was dismayed when grok replied to one of my questions today, when I described my situation in the UK, through the lens of help I could get through an OT, presumably being led by what official material is out there/ how our care has been arranged. I want, as...

Capture of the greens was a win for the biopsychosocial lot

Post copied to thread United Kingdom: ME Association governance issues ------------- I’m pretty sure that’s what they did argue in one of their public financial accounts, but i cannot remember which one. My related views - It seems to me to be a bit incongruous to be claiming to be funding...