UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

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ME Association

NEW WANTED PLEASE! SOMEONE LIVING IN KENT prepared to be interviewed by BBC RADIO KENT on Monday morning – round about 11.30am – to talk about the dangers of Graded Exercise Therapy as a treatment for M.E.
Part of an item they'll be putting out live on the new NICE guideline for ME/CFS. They're phoning Dr Shepherd now to see if he can also be involved.
Preferably, you will be someone who has been through a therapist-led GET programme and whose health has been harmed by the GET.
Please phone me as soon as possible on 07946 760 811 for a quick chat, or email me on tony.britton@meassociation.org.uk
Thank you!
Tony Britton, PR and Fundraising Manager, the ME Association
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Someone has been found.
 
Is it likely that the Royal Colleges continuing to take this position will cause problems with obtaining funding for the kind of research we need? Does their influence stretch to the NIHR and MRC as far as we know? Presumably their opinion won't matter all too much when it comes to the implementation of services and research when it is BACME who are actually running these, and they seem to be pretty cooperative.
 
Jonathan Edwards said:
I wonder why the Royal Colleges were too cowardly to make these claims at the roundtable?
Presumably because they knew they didn't have a leg to stand on.
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The difference between the "court of public opinion" and an official court-like process. Same process with "the election was stolen" in public but admitting in front of every judge, under oath, that, no, it wasn't. They're playing politics and, as said above, as if the roundtable didn't even happen. So what was even the point of this airing of grievances?
 
chillier said:
Is it likely that the Royal Colleges continuing to take this position will cause problems with obtaining funding for the kind of research we need? Does their influence stretch to the NIHR and MRC as far as we know?
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It's hard to know for sure, but grant applications tend to be scored against strict, detailed pre-set criteria. Of course there's always the issue of interpretation, and that depends on those doing the interpreting, but...there's probably more to worry about in other domains, especially service design and delivery?
 
rvallee said:
I may have missed it but I hope there's nothing in the guideline about "goals", "agreed" or not.
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I'm afraid there are a couple, which read like the usual oldfashioned CBT. It's where the BPS/CBT proponents obviously got their bit in.

Which is why it's vital that patients understand well that they are allowed and even expected to stay within their limits (as well as they can, this being Life and all, but at least not pushed by a therapist, no matter how "gently").
 
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