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

New Catch-22 disease, same as Old Catch-22 disease. Or maybe it's the same catch with a euphemistic hat and fake mustache.

https://twitter.com/user/status/1372915561072635912


Also: this is mainly why the alternative medicine industry is so large; health is completely inelastic, the lack of supply does not change how significant the need is. This is how companies like Goop and various charlatans make a fortune, they get more business than they can handle thrown at them.

 

Inside Sources: Long COVID Has a Baffling Sister: ME/CFS by Llewellyn King

quote:
Long COVID is the condition wherein people continue to experience symptoms for longer than usual after initially contracting COVID-19. Those symptoms are similar to the ones of another long-haul disease, Myalgic Encephalomyelitis, often called Chronic Fatigue Syndrome.

For a decade, in broadcasts and newspaper columns, I have been detailing the agony of those who suffer from ME/CFS. My word hopper isn’t filled with enough words to describe the abiding awfulness of this disease.

 

Yes, some of the right people know and have been sharing that yet somehow here we are and the average person and even medic when confronted with the reality thinks all their covid symptoms somehow are different for us. Again, I know that's not 100% it just feels like it shouldn't even be an issue. That these LC sufferers should all be saying wow this is a lot like that ME illness I've heard of. But alas no . . .

 

I attended the first Long Covid Alliance meeting where it was made very clear that the US Long Covid patient groups involved are very open to the possibility that Covid can cause ME, and that some people who have the label LC in any other circumstances would be labelled with ME.

 

I wonder if "exercise" was ment to be "infection" in the following sentence from the article?

- Onset is often after exercise, and the first indications can be flu-like.

 

Many years ago I watched a program on Oprah where a women with HIV described her lack of stamina and energy years into illness, it very much resembled ME. She described how she paced herself and planned her daily activities, it resonated with me but she didn't have ME.

 

I vaguely recall statistics that found Covid toes were really quite uncommon (low single figure percentage).

---
From a different, bigger study (Davis et al)
https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2.full-text

 

Maybe this is part of our current cultural problems:

I feel like this too but it's difficult. On the one hand, doctors aren't able to give me the proper medical help I desperately need. On the other hand, I still desperately need that help. Don't know where to turn.

There is an idea that there is a 'proper medical help' for any condition you might have. Presumably this reflects never having had anything very seriously wrong before. Maybe it reflects medical professionals overpromising or journalists giving false impressions. Medicine is brilliant at some things but not at lots of others.

Being ill for months after an infection used to be accepted as expected. It was the norm when I was a child. Presumably there are now two generations for whom the reality of infection is something unfamiliar.

 

What a load of voyeuristic drivel.
Spector should have objected to appearing in an article of that sort. The fact that he didn't says it all. He was in position to call out the rotten system last year but did he?

Drivel about microbiome and diet too. Buzzwords anonymous.

 

And we know this how? Even if HIV itself didn't cause ME, and I doubt we have any evidence for or against that, there are certainly examples of pwHIV who have developed ME from other infections. So I see no reason why she couldn't have had ME.

 

Thread .
Brings back memories

https://twitter.com/user/status/1372993960940081152

 

There was an interview with Tim Spector on Radio 4 recently - The Spark https://www.bbc.co.uk/programmes/m000rlpz

There were a few awkward pauses, re his new company venture, which I felt indicated he'd decided to monetise his ideas --- get some cash in the bank --- gone over to the dark side.

 

Video: Learning from the Past: The Long-Term Consequences of COVID-19

For some people infected by Sars-CoV-2, even those who were not severely affected at first, the ensuing weeks and months of “recovery” bring a surprise and a betrayal: they do not return to full health. They call themselves “long haulers,” and the condition is being called “Long COVID.” The threat of severe illness and death may be behind them, and the virus may no longer be detectable in their bodies, but as many as 1.5 million people with Long COVID might remain seriously incapacitated in the US in the coming year. In fact, it’s not unusual for patients to develop chronic, debilitating symptoms after infection. The phenomenon is called “post-infectious fatigue syndrome”. It can follow common infections, like mono or Lyme disease, or emerging and more severe diseases caused by Ebola, SARS and West Nile Virus. The symptoms of post-COVID long haulers can be indistinguishable from those typical of the illness called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and some important insights can be learned from existing knowledge.

Code:

https://youtu.be/rPW__rAN32w

https://www.youtube.com/watch?v=rPW__rAN32w

 

The journal JOSPT has accepted Simon Décary and his team's paper. He shares the title of the publication in the following tweet. The title is: Humility and Acceptance: Working Within Our Limits with Long COVID and ME/CFS

 

from Nina Muirheads presentation on the News from Canada thread

 

The American Academy of Physical Medicine and Rehabilitation bought a full-page ad in the Washington Post urging president Biden and the US Congress to "gear up for the next coronavirus crisis, by preparing and implementing a comprehensive national plan focused on the needs of millions of individuals suffering from the long-term symptoms of COVID-19."

https://www.prnewswire.com/news-rel...ions-suffering-from-long-covid-301250171.html

 

"commitment to enable everyone who had, has or will have COVID to function again as active members of their communities," he said. seems more of a plea for empire builders to get more funds so they can carry on doing more of the same if only pesky patients would push themselves into good health .

 

Lancet editorial: Long COVID: understanding the neurological effects

The concept of so-called long COVID has gained prominence in recent months, with some patients reporting persistent neurological manifestations, from milder symptoms such as headaches, hyposmia, hypogeusia, and fatigue to more severe conditions including sleep disorders, pain, cognitive impairment, and (in very rare cases) Guillain-Barré syndrome. WHO updated their living guidance for the clinical management of COVID-19 in January, 2021, which now incorporates a new practice statement on caring for patients with persistent, new, or changing symptoms after suspected or confirmed COVID-19. The guidance notes that clinical characterisation of long COVID is inadequate and, therefore, further research on long-term sequelae is warranted.

https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(21)00059-4/fulltext

 

That ME has many neurological symptoms is too often forgotten these days. Except by those determined to rediagnose all of us as having FND.

 

The concept of orphan disease exists. But what of diseases reneged by their specialty? The "parent" specialty is still alive, just derelict.

Derelicted disease? Neglected? "Went out to buy a pack of cigarettes and never came back" disease?

Maybe that's a good strategy moving forward, on the debate of "this is not a mental illness" = "why are you stigmatizing against mental illness?". It's a neurological disease. You can tell by the way it's classified as a neurological disease. That's kind of a big tell, what with having mostly neurological symptoms and everything.

But then again many health care systems simply reclassified for arbitrary reasons so people can always link to that and pretend otherwise. It's frankly amazing this profession makes any progress at all, though less surprising that it mostly happens in labs out of work done by people who aren't MDs using cutting-edge techology in basic research. The rest being mostly stagnant, barely changed for the last century. We are in such terrible hands...