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

Still by far the most common scenario I see: one day it just got better. Which is the same scenario as with bouts of remissions and relapses: one day it just got better, then another day it came back. But nothing special was done, no special diet or activities. Usually "it came back" is a variation of returning to work, too much exertion or vaccination. But "one day it was just better" is by far the most common version of events, with no obvious change leading to it.

That says a lot. It would be great if we could study this in detail. What actually changed?

 

A concerning article as it casts doubt on the existence and seriousness of long COVID. If you can get by the bad taste the cynicism leaves, what is fascinating is the description of the tremendous work of of long COVID advocates.

 

Article in Focus, a German weekly: (2021-09-21)

Hope for millions of people affected

German doctor cures Long Covid for the first time: "It's like a giant miracle"

At the Eye Clinic in Erlangen, doctors have achieved something that has never been done before: Four Long Covid patients were able to be cured by giving them a heart drug that was not yet approved. FOCUS Online spoke to one of the treating doctors about the medical surprise success...

https://www.focus.de/gesundheit/new...ienten-es-ist-wie-ein-wunder_id_23914347.html

google translate:

https://www-focus-de.translate.goog...to&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=nui,elem

I'm afraid I have the impression that this article reflects a current wider problem with medicine and perhaps science in general, not only in Germany.

Edit: Perhaps I'm unfair? It seems to me that it is extremely irresponsible to spread the news about those four patients as if there could be no doubt that the drug did the healing.

 

It appears to be disappointing, more of the usual waffling that seems to be far more about giving excuses for failing but not too bothered by the failure. 18+ months into this and every last one of those articles could have been written on day 1, no one's learned a damn thing and the old tropes must trope on because they have troped for too long to stop, whatever the consequences because, hey, it only affects patients and no one cares about what we think, nothing that can be whitewashed by a vague questionnaire of no relevance whatsoever.

https://twitter.com/user/status/1440337603102851079

 

‘My life is unrecognisable’: Long Covid patients describe struggle to get care in UK
https://www.breakingnews.ie/world/m...ts-describe-struggle-to-get-care-1187573.html

 

Sure makes all those comments from physicians about they know how to deal with this already and there's not much more to be done sound especially wrong. They literally point to the existing CBT/GET junk as if they've got this dealt with 99% or so.

The general message coming from medical professionals is that it's all good, they got this, no need to bother doing more. The universal message from the patients it's this is all junk and everything's still to be done. The disconnect is total, and yet it's really hard to know this, pretty much the only way is to experience it.

Is there any other issue where the relationship is not technically contentious (this isn't a robbers vs. cops type of thing, we are "technically" on the same side) but there is a complete mismatch between what the suppliers say and the users report? And literally no way to bridge that, as we can see with the NICE process.

 

The only non-political example I can think of is the guardianship industry in the US.
https://www.buzzfeednews.com/article/heidiblake/conservatorship-investigation-free-britney-spears

 

Tiresome and grim article. Spiked-online is British with a libertarian bent.

https://www.spiked-online.com/2021/09/17/is-long-covid-a-myth/

 

Wonderful that they base their case on a Canadian trainee psychiatrist's hot air.

 

It appears that "the new unreliable estimates are lower than worse estimates no one offered" is the official reason for considering Long Covid a non-issue in the UK. This is obviously a nonsensical argument, a false one even, since all the deniers making this point would have scoffed at even the rates that have been shown to be way over board.

And again shows that the evaluation is purely on ICU standards, including defining severe chronic disability as "mild" since it doesn't require urgent care. Especially for a system that has been praising itself for being "holistic" and considering the person as a whole with their BPS ideology, well, this is entirely predictable since it was obviously all for show and insincere. It says it in clear, "we won't see children in the ICU" (well, not many anyway) and that means it's all good. Somehow. What a dysfunctional broken system.

The faceplanting that is medicine's handling of Long Covid continues to faceplant, all thanks to decades of prior faceplanting that is a non-issue since it's our faces that get all the pain. It really all depends on the NIH, though, whether or not they'd rather waste this massive sum simply to avoid embarrassment.

https://twitter.com/user/status/1441132694222499840

 

At least from my perspective the reason for this is obvious;

They do not see the person as a whole - they see the person as a collection of bits, each with it's own medical specialty, and if each of those bits give results in range then that bit is fine, and so what if they don't actually work well together, each bit is 'fine' so there can be no problem, therefore there is no problem, apart from the patient being a lying hypochondriac.

and they have BPS for that.

 

There have been children in ICU in the US.

 

Speaking about that article in the New Yorker, here's a twitter thread on the author's (big surprise) conflicts of interest.

https://twitter.com/user/status/1440936029725286400


"It isn’t ethical for writer Dhruv Khullar to source Vinay Prasad here They’re both funded by VC firm Arnold Ventures Both work to research and reduce patient services to save hospitals money - how is this fair to Covid or #LongCovid patients?"

"Dhruv authored a few papers on Covid and #LongCovid health costs to hospitals, advising physicians on how and when to label patient care as “low value” and then cutting that care"

 

Is he incompetent or disingenuous? This isn't the kind of job where you can feign stupidity or pass ignorance as an acceptable answer. He's kind of hinting that this is a "no one could have predicted" kind of thing. This is why we can't have nice things. It's perfectly OK to lie about public health issues, to feign ignorance, to pretend they don't know what's going on when it's convenient, when basic facts aren't acknowledged exactly like in the most partisan politics.

"Unexpected" by whom? By the people making the decisions. Something that wasn't just expected but raised the alarm as early as it began showing up by complete amateurs with no funding or resources, let alone several institutes worth of them. And here this guy in charge of a giant research institute can basically use excuses of the "don't ask me, it's my first day, I know nothing about this" type.

If we can't have a shared version of the truth, grounded in actual truth, there is nothing that can be done. This is why it's all so damn broken, reality doesn't factor in, and neither do millions of lives. What is this nonsense? The total leadership vacuum in medicine is a major problem.


Long Covid Has Created an Unexpected Health-Care Burden, Says NIH Director
https://www.bloomberg.com/news/arti...s-long-covid-has-created-an-unexpected-burden

Long-term symptoms of Covid-19 affecting millions of Americans are “a deep mystery” that is troubling scientists and straining the health-care system, said Francis Collins, director of the National Institutes of Health.

“We have a huge burden here of chronic illness that we weren’t planning on as part of a pandemic,” Collins said at a virtual event sponsored by Bloomberg Philanthropies on Thursday. ​

 

And on that same article, if there is any doubt that it was meant to be derogatory and promote FUD, despite the obvious insincere attempts at deflection from the author, one of the physicians quoted shared the horrible Devine op-ed in the WSJ as good, and somehow thinks that people who insult others shouldn't be criticized by the people being insulted, somehow.

https://twitter.com/user/status/1441382662992654339

 

Indeed!

In fact, I saw another comment just like yours on twitter this morning:

"unexpected to WHOMST because disabled people told you this in FEBRUARY of last year"

I still remember seeing a simulation in late Feb. or early March of 2020. It showed a bunch of dots representing people. After a "dot" got infected there were only 2 outcomes, death or recovery.

And I thought, what about post-viral chronic illness like ME? I had no idea what percentage it would be, but I think to many people, not just ME patients, this is an obvious third outcome.

 

IN FOCUS Discussion: September's COVID-19 Update

around 8.oo

Dr. Brayden Yellman, who is a post-viral syndrome specialist with the Bateman Horne Center discussed the data of how many people are at risk of having long-term symptoms after recovering from COVID-19, how many are children, what experts are seeing in terms of symptoms, the similarities and differences to ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and fibromyalgia, how Long COVID is treated, and what people should do if they think they have Long COVID.

https://www.youtube.com/watch?v=N0tJM0PaYEo

 

The Week The cost of long COVID

quotes:

Whatever the cause, long COVID mirrors other mysterious, chronic illnesses triggered by viral and bacterial infections. Among them is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), cases of which have been linked to outbreaks of SARS, Ebola, and other viruses.

...
Treatment generally involves managing symptoms through physical therapy, cognitive exercises, and other treatments. "It's a long process, and people need to make a lot of behavioral and life adjustments," said David Putrino, a rehabilitation specialist who treats long COVID patients at New York's Mount Sinai Hospital.

 

I know there are studies that say the 2002-2004 SARS outbreak caused ME in some infected. I just would like to note the studies used Fukuda CFS criteria. Some of course could fit ME/CFS Canadian criteria or ME ICC criteria but this is not known as they used Fukuda CFS.

 

All anecdotal of course but I’m noticing a fair few people on Twitter who have been sharing their experience of suffering long Covid for the last year on there now sharing they have a year on or longer from onset reached remission or back to 90-95% functioning and able to do aerobic exercise again. Happy for them but could indicate recovery rates may turn out to be better in LC than ME?