UK - NHS England online tool and clinics for long Covid.

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The NHS
Lucibee said:
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This post and several following have been moved from this thread:
NICE Statement about graded exercise therapy in the context of COVID-19
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MEAssociation have responded to NHS England's response about NICE's statement and the advice on the Your COVID Recovery website: https://meassociation.org.uk/2020/0...rns-about-graded-exercise-and-covid-recovery/
Powis quotes this from the YCR website [correction, it's NOT from the YCR website - but he said it was "reflected" by it, which it isn't!]:


I'm going to do some digging into this quote and do a follow-up post...
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It's from here: https://www.england.nhs.uk/coronavi...atients-recovering-from-covid-19-aug-2020.pdf

It clearly clueless when you look at the bit I've highlighted:
Of people who have been critically ill, 10% could develop chronic fatigue. Although some people who have had COVID-19 may experience post-viral fatigue, there does not appear to be an association with post-viral fatigue and diagnosis of chronic fatigue syndrome (CFS) or myalgia encephalomyelitis (ME). For those who do experience chronic fatigue, there is conflicting evidence regarding benefits or harm of pacing. Graded exercise therapy (GET) should be offered to those with mild or moderate CFS and only provided to those who choose these approaches.
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Pacing! Benefits of harms of pacing?! And then warbling straight on with GET should be offered ...

ETA: X-posted with @Lucibee
 
I do wonder whether people (who have never experienced fatigue or are not familiar with ME) simply get confused with the term "pacing" and think it means walking or walking exercise (eg, pacing up and down).
Given there is similar confusion about the step test where some think "steps" mean "paces" rather than "stairs", it could just be linguistic...

Do you think that's it, or is there some malicious peddling (not cycling) going on behind the scenes?
 
Lucibee said:
I do wonder whether people (who have never experienced fatigue or are not familiar with ME) simply get confused with the term "pacing" and think it means walking or walking exercise (eg, pacing up and down).
Given there is similar confusion about the step test where some think "steps" mean "paces" rather than "stairs", it could just be linguistic...

Do you think that's it, or is there some malicious peddling (not cycling) going on behind the scenes?
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Some of both I think. I mean the PACE trial wasn't so-named out of pure coincidence; it was I'm sure a deliberate ploy to help conflate the notions of pacing and graded exercise in people's minds. Just one of many ploys we've seen down the years, and it still goes on.

In this particular case it could just be someone has written it who is not tuned-in, depends who wrote it.
 
Andy said:
Dismissive response from NHS England to concerns about graded exercise and Covid recovery

https://meassociation.org.uk/2020/0...rns-about-graded-exercise-and-covid-recovery/
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CFS is literally coded under PVFS. What in the hell are these people on? This letter is offensive and filled with lies. Complete dereliction of duty, injecting outright propaganda of an imaginary "controversy" over pacing. This is pure ideology and devoid of any connection to reality to the point of criminal misconduct.

Duty of candor not met, not in the slightest.
 
The Powis letter was drafted by a junior official and reads like a standard letter intended to be churned out to anyone raising concerns. It is not in any sense a response to the issues raised or reflective of the fact that the two ME organisations speak on behalf of substantial numbers of people with ME. I think it is insulting that Powis allowed this to go out under his signature. I think the APPG on ME need to step in now and call for a meeting with him probably the APPG should be reaching out to the Covid APPG to see if it can be done jointly.
 
NelliePledge said:
The Powis letter was drafted by a junior official and reads like a standard letter intended to be churned out to anyone raising concerns. It is not in any sense a response to the issues raised or reflective of the fact that the two ME organisations speak on behalf of substantial numbers of people with ME. I think it is insulting that Powis allowed this to go out under his signature. I think the APPG on ME need to step in now and call for a meeting with him probably the APPG should be reaching out to the Covid APPG to see if it can be done jointly.
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Given two media reports following the COVID APPG meeting said long COVID cases were being dismissed as having ME, that won’t necessarily help.
 
Dolphin said:
Given two media reports following the COVID APPG meeting said long COVID cases were being dismissed as having ME, that won’t necessarily help.
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Well that was what someone giving evidence said that’s not necessarily the opinion of the APPG group and I would hope they would be open to input from the ME APPG

eta in fact in view of that comment I think the ME APPG have a responsibility to try to build bridges to the CV APPG. I’m sure they have this in hand
 
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Dolphin said:
Given two media reports following the COVID APPG meeting said long COVID cases were being dismissed as having ME, that won’t necessarily help.
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It's annoying to hear but technically the NHS considers ME to pretty much be anxiety so it's more of an indictment of failure than an insult to ME. Which it kind of is but still, it's based entirely on the psychosocial version of ME that is used in practice and is virtually indistinguishable from... uh... stuff, I guess, since it's completely amorphous and insubstantial.

Obviously the response would be to fix the fact that ME is completely misrepresented and unjustly maligned but in the meantime this does not help people with long COVID. The two problems are wrapped in one but separated by an imaginary line, one that will not hold with time because most COVID-19 cases were never formally tested and the absence of reliable tests after the infection becomes undetectable by PCR.

Point is none of the people on the APPG know what ME actually is and so cannot adequately compare them and see that they have at least 90% overlap. They can only rely on what the experts tell them and in this case the experts are charlatans who lie all the time, can't really fault people for listening to experts who just blatantly lie to them.
 
Lucibee said:
It comes from page 20 in the latest version here: https://www.england.nhs.uk/coronavirus/publication/after-care-needs-of-inpatients-recovering-from-covid-19/

[cached html version is here, in case it changes again: https://webcache.googleusercontent....atients-recovering-from-covid-19-aug-2020.pdf]
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I had a screenshot of the text of the earlier version on file:

rehabcfatigue2.png




I've also attached the PDF of the 5 June 2020 version.


Revised version (August 2020):

https://www.england.nhs.uk/coronavi...atients-recovering-from-covid-19-aug-2020.pdf

revised-3-august-2020.png
 

Attachments

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Barry said:
It's from here: https://www.england.nhs.uk/coronavi...atients-recovering-from-covid-19-aug-2020.pdf

It clearly clueless when you look at the bit I've highlighted:

Pacing! Benefits of harms of pacing?! And then warbling straight on with GET should be offered ...[/USER]
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Sorry for going light hearted, but I just had visions of Michael Spicer doing one of his “The Room Next Door” sketches on the bold words above. If this had been a verbal statement instead of written.

oh, and the “myalgia” (sic) encephalomyelitis :banghead:

Had to laugh, or I’d be crying, or possibly suffering with hysterics!
 
NelliePledge said:
The Powis letter was drafted by a junior official and reads like a standard letter intended to be churned out to anyone raising concerns. It is not in any sense a response to the issues raised or reflective of the fact that the two ME organisations speak on behalf of substantial numbers of people with ME. I think it is insulting that Powis allowed this to go out under his signature. I think the APPG on ME need to step in now and call for a meeting with him probably the APPG should be reaching out to the Covid APPG to see if it can be done jointly.
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NelliePledge said:
Well that was what someone giving evidence said that’s not necessarily the opinion of the APPG group and I would hope they would be open to input from the ME APPG

eta in fact in view of that comment I think the ME APPG have a responsibility to try to build bridges to the CV APPG. I’m sure they have this in hand
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Does anyone remember the name of the member who has contact with Carol Monaghan please?

I have no doubt that Forward ME, APPG, Researchers and charities (UK) are communicating and deciding next moves, but it may help if @NelliePledge ’s message can be passed on?
 
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