Long Covid in the media and social media 2022

True, but near the end of the article she is quoted as saying:

"Just keep positive because if you don't keep positive you can't get anywhere," she said. "Just keep going even if it gets tough. Just keep going because in the end, you will be able to do it."

Exactly what shouldn't be advised in the case of ME.

 

"Two years with Long Covid: 'The doctors don't know how to fix it'"
The full 11-minute segment on RTE's Prime Time* is available at the link
https://www.rte.ie/news/primetime/2022/0922/1324956-long-covid-neurological/
ME gets a mention at 7:04

*RTE is the primary beneficiary of the TV licence fee in Ireland

 

Specific segment:

 

Twitter thread with quotes and summary:
https://twitter.com/user/status/1573363450700763136


And recording of the event:

https://www.youtube.com/watch?v=toZXu-FA_nw

 

Time Magazine -

Why You Should Rest—a Lot—If You Have COVID-19

https://time.com/6215346/covid-19-rest-helps/

That last sentence in the quote -- saying that people with ME/CFS "prefer" pacing to GET -- is very strange. It feels like "both sides" reporting, positioning both treatments as having the same level of evidence/effectiveness and it's simply up to the patient to choose the one they prefer.

And they even include a link to this 2019 study (my bolding):

It's quite a stretch to turn that sentence into "most people prefer pacing" which sounds like it's simply a matter of taste.

 

Until it happens to you.
More of this needed
https://twitter.com/user/status/1573037420525895680

 

It really highlights how good people can ultimately be forced into treating patients badly and endangering them with systemic choices they have no power or control over. The medical environment is what is broken and quite a few of these choices forced were bad doctoring but also by funding and administration. The level of reform necessary to finally get patients the proper care is not coming any time soon.

 

https://twitter.com/user/status/1573723353126404099

https://twitter.com/user/status/1573827559741063169

 

https://twitter.com/user/status/1574358076513452032


(This is the doc that was sarcastically pushing back against a mind-body intervention for LC in this thread).

 

Really not looking like medicine is responding to the most gigantic smoking gun firing on repeat and prefers to fall back on the same old familiar failure. The inability to learn from experience is just absurd.

https://twitter.com/user/status/1574827964251897856

 

At least the President of the Australian Medical Association has his eyes open (as well as a decent meme game).

https://twitter.com/user/status/1574866805755035649

 

https://news.sky.com/story/blood-te...id-risk-and-allow-early-intervention-12706671

Study thread here:
https://www.s4me.info/threads/plasm...sars-cov-2-infection-captur-et-al-2022.29710/

 

From US Senator Markey:

 

First we had thoughts and prayers. Now we have memes. Still no walk, though, but the talk is up-to-date.

"Person best-placed to do something asks other people to do something, anything" has always been one of my favorite tropes. That's leadership you can count on... as long as you don't expect them to do anything. Memes, though. Oh, the memes.

 

I have no idea how good or otherwise this talk was

 

The Scientist Multiple Possible Causes of Long COVID Come into Focus

quotes:

Taken together, studies suggest that long COVID and its many symptoms may not have just one cause, and may not be just be one disease. “There may not be a single mechanism for all long COVID—there could be multiple mechanisms ongoing, and for some individuals one may be more dominant than the other,” says Nath.

...

Another immune-related hypothesis for long COVID, which Nath says doesn’t necessarily preclude inflammation-related symptoms, is that the body starts targeting itself. Long COVID shares symptoms with some suspected autoimmune diseases—mainly ME/CFS, which is marked by post-exertional malaise and muscle pain—and multiple studies have found that long COVID patients develop self-antibodies that persist for a year, and perhaps longer.

 

I highly doubt there's a single mechanism for all of long Covid. It's just too heterogeneous. I see it as an umbrella term for any health problem caused by Covid. There's no way someone who's constantly breathless has the same problem in their body as someone who gets ME, for example. Well-defined but inclusive subtypes of LC would be welcome.