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

rvallee said:
https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353
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The main changes needed are:

>rationalisation and reorganisation of the myriad of services for people with continuing disability into a coherent, comprehensive rehabilitation service
>ensuring that every patient with persistent disability is seen by the rehabilitation service from the outset, preferably from first contact with healthcare
>providing the service in all settings from intensive care through hospitals and care homes into the wider community, in parallel with medical services
>providing rehabilitation across all ages and conditions
>ensuring full integration between mental health services and rehabilitation services
>a parallel reconstruction of commissioning, reducing the emphasis on ‘specialist rehabilitation’ by recognising that all rehabilitation requires expert knowledge and skills.
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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?
 
It's M.E. Linda said:
@rvallee
Simon Wessely has not been associated with the Royal College of Physicians (RCP) but

“he was.....past President of the Royal College of Psychiatrists, current President of the Royal Society of Medicine and is also chairing the Independent Review into the Mental Health Act.“

(RCPsych)
(RSM)

https://www.ukri.org/about-us/gover...-committee/our-council-members/simon-wessely/
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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.
 
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NelliePledge said:
If it’s on the NICE website it is technically publicly available. But like when the CDC removed GET/CBT not publicised. So the minimum has been done.
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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.
 
NelliePledge said:
There’s a report about the letter but it doesn’t link to the content of the letter itself
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Given that Shepherd and Weir are on the MECFS NICE review committee and the letter was signed by others on that committee, and it was a letter to NICE, it's possible there were things in that letter that can't be published because they refer to discussion in the committee.
 
Lucibee said:
And neither is the letter that the ME Association wrote to provoke it. Unless I've missed it...?
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Trish said:
Given that Shepherd and Weir are on the MECFS NICE review committee and the letter was signed by others on that committee, and it was a letter to NICE, it's possible there were things in that letter that can't be published because they refer to discussion in the committee.
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@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
 
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Trish said:
Given that Shepherd and Weir are on the MECFS NICE review committee and the letter was signed by others on that committee, and it was a letter to NICE, it's possible there were things in that letter that can't be published because they refer to discussion in the committee.
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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.
 
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It's M.E. Linda said:
@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
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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.
 
adambeyoncelowe said:
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.
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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. :facepalm:
Just hope the NDA didn't also include revealing that they had even sent a letter!
 
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