News about Long Covid including its relationship to ME/CFS 2020 to 2021

deconditioning again:

https://www.theguardian.com/society...tional-therapists-brace-for-covid-second-wave

 

I don't see anything indicating they are acknowleding PEM.

The finding of persistence of SARS-CoV-2 is very interesting however.

 

https://twitter.com/user/status/1324737440632983552

 

Are these people seriously not aware that most people do not regularly exercise and that this is not how deconditioning works at all or what? This obsession is super weird, as if sedentary people who do not have a chronic illness do not exist. A significant % of the population is less active than I am despite having no disabling symptoms.

I mean this is well-known. How can something that is common knowledge just be entirely dismissed when it's inconvenient? Ideological bubbles are ridiculous.

 

The "deficit in athletic ability". They just misunderstand it to mean people can't run a marathon like they are used to, rather than people who were ready to run marathons a few weeks ago and now can barely walk more than 5 minutes.

 

I had heard good things about the Mt Sinai clinic but it appears they have already given up trying and have moved to rousing reassurance and attention. That was quick. I've rarely seen people give up so quickly in the face of a challenge as physicians faced with a problem they don't know how to begin solving.

Maybe we should try giving problems to people who aren't deterred at the slightest bit of friction? Weird idea, I know, that to solve a complex problem you actually have to work at it.

 

BBC correspondent: 'Long Covid has left me exhausted for seven months'

https://www.bbc.co.uk/news/uk-scotland-54793726

 

'I could barely function' – the devastating effects of long COVID

https://www.pharmaceutical-journal....tating-effects-of-long-covid/20208498.article

 

New tears in the same old bottles. All for an insane ideology. Ugh.

WE TOLD YOU SO.

 

Posting because this seems "official" NHS. But it's very generic fluff. I have no idea what the point is, there is so much redundant work in health care it's maddening, seems like half of all efforts are wasted simply on people doing the same things independently even though the results are nearly identical because they all work from the same assumptions anyway. It's roughly the same content as the Your Covid Recovery site and about as helpful.


People with 'Long COVID' Encouraged to Access Keeping Me Well Website

https://cavuhb.nhs.wales/news/home-...encouraged-to-access-keeping-me-well-website/

https://keepingmewell.com/

 

What they recommend for covid 19.

It could be that this is not intentionally misleading but it doesn't look good.

 

This is not, in my experience, what pacing is.

Pacing is taking small, appropriate, steps towards a goal, with appropriate rests in between.

The problem is, the largest one at least, IMO, that they have the goal wrong.

My goals are to be able to prepare a meal, to get a bath occasionally, to keep the dirt on the carpet under 6 inches deep, etc.

My goal is not to train to be able to climb mountains.

 

Really interesting video from long hauler Run-DMC, who somehow managed to perform an informal study asking pertinent questions and produced more useful results than literally all the BPS body of evidence has in the last century or so put together. Sorry if this is a bit confusing it's really hard for me to make this post my brain is overheating from the effort aaaaaaarrrgh.

The premise was to ask questions on Long Covid groups about other immune-mediated diseases, in this case asked about rheumatoid arthritis, PVFS and atopy, which is defined as "the tendency to produce an exaggerated IgE immune response to otherwise harmless environmental substances", in this case specifically asthma, hay fever and eczema. It would be very interesting to expand the sampling and questions. This is almost always the problem here: the researchers who ask pertinent questions cannot get funded and those who only ask impertinent questions get all the funding. Unfortunately research is all about asking pertinent questions so here we are.

There are calculations about relative incidence in the population that I can't verify because of brain fog, but the % don't seem out of whack and the variations found in the sample are outlandishly enough outside of standard variation that it's worth looking into. The numbers for PVFS are obviously the least reliable ones but see the most significant increase, which is consistent with past infections being a potential risk factor.



You read that right, 23% of this sampling had prior PVFS. Most likely mild and impossible to fully confirm, but this is statistically so off the chart it demands investigation.

Also asked whether those conditions have improved, worsened or stayed the same:





It certainly would make sense that autoimmune diseases do not happen spontaneously. It's also fitting that all those immune-mediated diseases were explicitly classified as psychosomatic. Medicine and failing the germ theory of disease, name a more iconic duo (also works with ironic...).

https://www.youtube.com/watch?v=hnPvw20iH80

Gez still avoids talking about ME, probably doesn't want to think about what it implies. There are comments below the video asking the question and he says it looks a lot like the underlying factors are the same. To be fair it's so confusing to get started, there is so much contradictory information and the more official a source is, the more likely it is to be disinformation. Which is a serious issue but understandably causes hesitation about making comparisons.

(My brain is now effectively a puddle of fatty goop)

 

As the first comment in the thread for this article on the /r/CovidLongHaulers sub-reddit said, it's gonna be a while until real help actually arrives. Ooooooh boy, these people are genuinely not listening to a damn thing and do whatever the hell they want to do, regardless of what's actually pertinent.

Nothing says a profession doesn't care about something under its remit more than not even bothering to name it. It shows, it really shows they don't understand a damn thing about what the problem even is or the stakes. Lots of psychobabble anchored on the small minority of cases where they can label everything under anxiety.


Confused About Covid Brain Fog? Doctors Have Questions, Too

https://www.wired.com/story/confused-about-covid-brain-fog-doctors-have-questions-too/

You can tell how everything is broken by the fact that two mutually exclusive versions of reality co-exist with seemingly no one noticing that they are fully incompatible with one another. It's both completely brand new, never seen before, but also everyone knows about. And everyone knows about but no one has any damn answer. Well they have answers but they're irrelevant to the problem, which exists but also doesn't.

They hear people telling them they can't think right and genuinely believe it's a good idea to suggest doing brain puzzles and take up classes online. And they hear people who can't exercise and genuinely believe it's smart to advise exercise. It's like everything the patients tell them is made up entirely of white noise and WAH-WAHS, like adults in the Peanuts cartoons.

I expected the dysfunction but it's still shocking to see just how maximally dysfunctional it plays out.

 

I don't think it's been posted yet? Definitely not just the NHS, but especially the NHS, ironically because it is more prepared, it's just prepared for an imaginary alternative version of reality.


Why is the NHS ill-equipped to care for Long Covid patients? Lessons from other chronic illness and ‘medically unexplained symptoms’

https://www.healthcarehubris.com/an-ill-equipped-nhs-for-long-covid

https://twitter.com/user/status/1324781319218434048

 

'Social interactions often help patients start to rehab their brains. Visits with family and friends can keep them engaged and help them flex the cognitive powers that lost strength during an illness'.

This has been quite the opposite 'solution' in my case of 'brain fog'.

 

I haven’t been able to keep up with this (prolific) thread as of late, but have there been a subgroup of people now with long COVID that are getting diagnosed with ME/CFS? Has it been making any news?

 

Long Covid: what teachers and pupils need to know

https://www.tes.com/news/long-covid-what-teachers-and-pupils-need-know



A discussion of Jo Daniels' defense of CBT for ME/CFS and CBT has been moved here:
https://www.s4me.info/threads/jo-daniels-on-cbt.17799/

 

from that series of blogs

https://www.healthcarehubris.com/po...are-models-biomedical-versus-bio-psychosocial

 

I thought it was interesting to see this from Paul Garner. And he’s a doctor:
https://twitter.com/user/status/1325193883114827777