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.

 

Physios for ME: "NICE Publish new Guidelines"
https://www.physiosforme.com/post/nice-publish-new-guidelines

 

This is not really a big barrier. It shouldn't be hard for top executives at a major health agency to understand the background knowledge. You don't need to be a patient or have a medical/biological background to grasp the issues.

 

I may have missed it but I hope there's nothing in the guideline about "goals", "agreed" or not.

 

What a petulant and unprofessional response. Textbook rejecting evidence and substituting their own. Clearly what evidence-based medicine means is "evidence I agree with", which defeats the entire purpose.

 

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.

 

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?

 

Like many people with ME I haven't managed to get on a bus for decades so I don't care what the smug beggar thinks

 

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?

 

Just tried to encapsulate my feelings on the RCP et al. joint statement here:

https://twitter.com/user/status/1454134247921434631

 

I'd have thought that's most likely, they will probably tags/categories on the post and the CMS does the rest - unless the web admin secretly supports us

 

Do ambulance crews / first responders have their own professional journal that could be encouraged to report on this new guideline? Would so love for them to have this brought to their attention. The so very much need to be more aware.

 

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").

 

That's encouraging. Seems the news outlets are seeing this as a hot story, and clamouring to get in quick.

 

No, indeed, so that leaves... hmm

 

I have the title now for my memoir expose:

Throwing Asteroids at Dinosaurs.

I jest. But there's a part of my brain now thinking, "I could totally do that..."

 

They're cowards. They couldn't stand behind their arguments in person so they do it behind an anonymous statement instead. Yawn.