NICE Statement about graded exercise therapy in the context of COVID-19

oh man i am hearing you on that!

 

That's from Derick Wade, who claimed of PACE that that "trial design in this study was very good, and means that the conclusions drawn can be drawn with confidence" and "every patient who wishes to be helped should be willing to try one or both of the treatments".

His position, and the risk of the sort of "comprehensive rehabilitation service" he wants to see in place for people with a range of needs, is one reason why I think ME/CFS patients in the UK would be taking a risk with any sort of rehabilitation service.

 

The main problem with that is in understanding the use of the term "coherent".

We would probably like to see a"logical and consistent" service, provided it followed the right logic and consistency.

Would we want to see a "forming a unified whole" service of the wrong sort?

 

Wessely hasnt personally but his wife, gp Clare Gerada was its president. Very powerful couple :-(

 

I wonder whether any Post-covid sufferers have yet started to understand the use of the word "post". I bet they all think it's aetiological. Sometimes it can take years to understand that it may merely be describing correlation and not causation.

Some of them may have had the benefit of a short period of remission. After that the virus may be playing no part. According to theory.

It must not be forgotten that the early introductions of the idea of GET in association with CBT were in papers in books describing PVFS.

 

Trial By Error: NICE on Exercise and Post-Covid Syndrome
https://www.virology.ws/2020/07/15/trial-by-error-nice-on-exercise-and-post-covid-syndrome/

 

Gerade was head of Royal College of General Practitioners rather than Physicians.
Worth remembering that Royal Society of Medicine is a club, not an academic body like the colleges.

 

And neither is the letter that the ME Association wrote to provoke it. Unless I've missed it...?

[eta: Sorry - I've misinterpreted what happened here. MEA didn't write the letter.]

 

The actual least possible minimum, as it basically says nothing. So it's a non-statement, bland, not even publicized that is as vague and non-specific as possible. Basically a perfect metaphor for why we are in this mess to begin with, style and substance.

It's even insulting since we know they will push it and it's only a question of whether circumstances allow it, whether politics support the old woo or choose science. The likely clincher will probably be the very tangible fear that it can happen to anyone, including rich "important" people. Which was always true of ME but whatever, told you so and so on and so forth.

 

I had thought I had seen it linked to from the MEA Facebook page. I will see later if I can find the link.

 

@Trish beat me to it. I agree, I got the impression that it was perhaps written in their capacity as members of the review committee.

Perhaps @adambeyoncelowe could please advise whether this letter is available publicly or whether it has to remain confidential at the moment?

Edit: grammar

 

I am totally with you too

 

I've asked on Twitter whether the letter from the MEA to NICE could be made available. [eta: see correction above - there was no letter from MEA.] I fully understand if they only include the relevant sections, but the wording is so crucial here, and the statement from NICE makes it seem that pwME are being thrown under the bus. MEA have made it very clear that that want advice about GET withdrawn, and for warnings to be put on the existing guidance at the very least. But they need to be seen to do this at every available opportunity. There is no room to simply assume that everyone understands their position on this.

I think other orgs are beginning to get the message. This is the advice published by RCOT (Royal College of Occupational Therapists): https://www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19-0

I've yet to find any specific advice from NICE on post-COVID fatigue.

 

The letter can't be published publicly. All the NICE deliberations are under NDA. Presumably, it can be talked about once the guideline is finally published, as NICE would be subject to the FOI Act.

 

Oops. If MEA [correction: authors of the letter (not necessarily connected with MEA)] are under an NDA, then they were a wee bit foolish to say that the statement was the result of a letter they sent if they can't then reveal what was said.
Just hope the NDA didn't also include revealing that they had even sent a letter!