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

The key point with the NHS "yourcovidrecovery" is that they want to be seen to be doing something, rather than simply ignoring the problem. This illusion of care is important as far as the perception of the NHS by the (unaffected) public and as an answer to politicians when they ask "what are you doing to solve the problem"

Any subsequent lack of efficacy can easily be dismissed by claims that well, this is new so we don't know what works. Of course, perceptions of efficacy and satisfaction can easily be biased to look positive using the usual techniques.

 

https://twitter.com/user/status/1288834441696215040

 

Anyway, nice pamphlet with generic, non-specific advice for what these people consider to be vague, non-specific complaints (emphasis on complaints, not health problems or symptoms, complaints). That's very helpful for people whose job it is to write and/or promote nice pamphlets with generic non-specific advice. Just as advice to exercise is good and great for healthy people, not for people who aren't. And since most people are healthy, well, it's good advice for most.

Honestly at this point just go full Deepak Chopra. Who would even tell the difference? It's always "FANTASTIC" and "BRILLIANT!!" and "EXCELLENT!". None of the people replying with those encouragements have actually looked at the substance. Everything is about style and positivity. Nobody checks the outcomes anyway so anything goes. So in what way is this different from alternative medicine, other than being way more expensive and having the full force of law?

Not surprising to see one of those names, and probably a few more behind the scenes:

https://twitter.com/user/status/1288391047576461312

 

https://twitter.com/user/status/1288867640040214541

 

We're trying hard to get some information included about PVFS/ME - will keep you posted.
We did manage to get a mention of PVFS on the CSP website which wasn't initially included - baby steps
https://www.csp.org.uk/public-patient/covid-19-road-recovery

 

https://twitter.com/user/status/1290529503798792193

 

It is an appalling indictment that people are still having to learn for themselves that "pushing themselves" only causes harm, if suffering from this condition. It is not as as though people have not been highlighting the fact.

Oh well, you can cure your effort syndrome if you really want to.

 

The words 'brilliant team" and "experts" stand out.

 

This is great and necessary.

And good that this thread got a little activity because I was wondering what came of this as it seemed to have made as much of an impact as a gnat fart. There were major headlines announcing this program and to say it falls short of delivering is a massive understatement. I have not seen any discussion since the day it was launched. That's what you get when the only motivation is "better than nothing", which basically anything is if you simply change the definition of better.

 

Merged thread


Inside health radio 4- long covid

inside health on radio 4 with dr Mark porter on now 9.00pm uk. Talking about long covid and looking at the services being set up

 

Sadly many accounts of reduced function and incapacity are from those who did not go to hospital- indeed some did not have severe COVID symptoms.

Another well thought out study ( hint if sarcasm)

 

That tweet seems to have been removed.

 

Trial by Error by David Tuller: From UK's National Health Service, "Your COVID recovery"

The NHS site delivers its messages with a large dose of encouragement, as if recovery is more or less assured for most patients. If that were the case, then the guidance probably wouldn’t be needed. Unfortunately, as the site itself makes clear, a significant number of people who have battled acute Covid-19 continue to experience persistent problems.

And notwithstanding some useful information, some sections, like those on “fatigue” and “getting moving again,” present a so-called “biopsychosocial” framework and approach that seems lifted from the PACE playbook, with an emphasis on the “psycho” and “social” rather than the “bio.” The text makes little mention of possible underlying abnormal physiological processes that could be causing the ongoing fatigue. These sections do not mention possible links with ME/CFS, although these possible links have been widely noted by health officials and experienced clinicians—including some who themselves have suffered serious post-covid symptoms.

 

the account has been closed...very odd
eta: it came from the thread posted by kalliope

 

https://meassociation.org.uk/2020/0...e-management-of-post-covid-fatigue-syndromes/

Also posted here, Possibility of ME or PVFS after COVID-19

 

Overall a good letter but....

Bolding mine.

This has a suspicious whiff of pacing up as AfME put it. Although he does say it should take into account the patient's energy envelope & it is written about post covid & not necessarily ME.

My big gripe is that it takes more than a month or two to get to grips with one's energy envelope and it's a moving target at the best of times. There seems to be an easy assumption of predictability and stability that doesn't necessarily reflect the true nature of ME at least. Going by some of the tweets posted on the forum post covid seems fairly unpredictable too.

 

Agreed.

To me it is outright cowardly for the NHS to strongly endorse and recommend a treatment, but to then say it is the patient's fault if they are harmed by it. I cannot see that standing up in a court of law, which if it stands is likely where it will end up.

What that disclaimer clearly shows in fact, is that the NHS is under no illusions about the potential risks to patients if they follow the advice being given; they understand the issues and are fully aware. So that disclaimer, to my mind, would shoot them down in flames in any legal challenge; they know they have no excuse. Where do these folk have there heads!

 

It's absolutely outrageous, and whoever sanctioned this should be facing disciplinary procedures. I'm speechless.