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

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]

 

The NHS

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 ...

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?

 

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.

 

BPS people like Peter White and Trudie Chalder resigned from the CMO report as people wanted pacing to be recommended alongside CBT and GET. They see it as unnecessarily giving in to the illness.

 

https://twitter.com/user/status/1294287638011228160

https://twitter.com/user/status/1294288861858795522

 

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.

 

I find the whole notion of unhelpful thinking bitterly ironic, because the whole BPS approach to ME/CFS seems born out of their own unhelpful beliefs and forever steeped in them.

 

Psychological projection meets the Dunning-Kruger effect.

 

I had to look Dunning-Kruger up, but yes, absolutely yes.

 

Given two media reports following the COVID APPG meeting said long COVID cases were being dismissed as having ME, that won’t necessarily help.

 

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.

 

I had a screenshot of the text of the earlier version on file:





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

 

The Oxford Health NHS Foundation Trust document that was pulled following complaints, but which can still be downloaded from this GP practice:

http://poplar-grove.co.uk/media/1366/oh-01120-coronavirus-and-fatigue-v2.pdf

copy archived on my site here:

https://dxrevisionwatch.files.wordpress.com/2020/08/oh-01120-coronavirus-and-fatigue-v2.pdf

Psychosocial Response Group

Coping with Coronavirus Fatigue

stated on page 3:

 

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

Had to laugh, or I’d be crying, or possibly suffering with hysterics!

 

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?