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

Partly related to the comments on the APPG but also of general interest:
Cardiovascular events are not uncommon after ordinary flu (new study though I think this is widely known):
Acute Cardiovascular Events Associated With Influenza in Hospitalized Adults
A Cross-sectional Study
Eric J. Chow, MD
https://www.acpjournals.org/doi/10.7326/M20-1509

 

Person who doesn't know much about X: "this is clearly not like X"

"And how much do you know about X?"

"That this is clearly not like X"

Proceeds to describe X but insists it's different because reasons

Right. Carry on. One thing I do know about that thing is that it's definitely different than a thing I know nothing about. Illness after a virus is obviously not post-viral illness, Shirley.

I do love the meta-irony of people dismissing ME out of concern that it's dismissive to post-COVID. Which, uh, hello?

 

https://twitter.com/user/status/1298310829578780672

 

https://twitter.com/user/status/1298294516424867841


https://twitter.com/user/status/1298337384292069380

 

Yes, clearly.

 

Good article but the part about PEM happening 1-2 days later "rather than" immediately is not accurate. It depends a lot, the 1-2 days delay is the odd thing out, but I often crash pretty immediately from too much exertion. It's both and the delayed effect is the weird one, but it's not mutually exclusive.

I'm a little too worn out to argue that, though.

 

https://twitter.com/user/status/1298339322622550023

 

Maybe they want to make clear that these post viral symptoms are serious. Not "only" chronic fatigue. Duh

 

Anyone able to find the recommendations document. I think it was the August 5 meeting but the link is only giving me a transcript:

https://appgcoronavirus.marchforchange.uk/publications_appg

I’m interested to see whether they say anything about ME/CFS.

ETA: I found this letter. Perhaps that’s all that there is https://twitter.com/user/status/1298197491222032385

 

From the article:

Feeling out of breath and racing heart in my experience during a viral infection is common for me, and "PEM" will come on immediately after exertion. The delayed PEM occurs when I've gone over my 'energy window'. I don't feel out of breath and my heart does not race. It's a whole different experience.​

 

https://twitter.com/user/status/1298375506707001346

 

This is sort of relevant, although it's approaching from entirely the diagonally opposite end of the spectrum, i.e. people who are "fit and healthy":

http://www.msn.com/en-gb/health/fam...on-new-evidence-shows/ar-BB18lWMt?ocid=ASUDHP

 

#MEAction hosted a seminar for covid-19 long-haulers, or people who have contracted covid-19 and are still experiencing symptoms months after the initial illness.
full video here

https://www.youtube.com/watch?v=UV9NHTONrJs

eta:

Code:

https://www.youtube.com/watch?v=UV9NHTONrJs&feature=emb_logo

 

This is the paper the article is based on

https://link.springer.com/article/10.1007/s11420-020-09777-1

Considerations for Return to Exercise Following Mild-to-Moderate COVID-19 in the Recreational Athlete

"The COVID-19 pandemic has resulted in significant morbidity and mortality around the world. The spectrum of COVID-19 is broad, from clinical disease requiring intensive medical care to less severe symptoms that are treated with supportive care. The majority of COVID-19 cases fall into the mild-to-moderate category, with symptoms lasting less than 6 weeks. Nevertheless, the morbidity from COVID-19 is significant and can affect multiple body systems, most frequently the cardiac, pulmonary, hematologic, musculoskeletal, and gastrointestinal systems. For patients who wish to return to exercise after mild-to-moderate COVID-19, the wide range of disease expression presents a challenge for clinicians seeking to offer counsel. This literature review on return to activity following mild to moderate COVID-19 in the recreational athlete includes evidence-based considerations and recommendations for clinicians in guiding the safest return to activity."

 

‘Gaslighted by the Medical System’: The Covid-19 Patients Left Behind

https://elemental.medium.com/gaslig...he-covid-19-patients-left-behind-3ee0d3419197

 

A dilemma for ‘long-haulers’: Many can’t prove they ever had Covid-19
by @dave30th

https://www.statnews.com/2020/08/26/long-haulers-dilemma-many-cannot-prove-they-had-covid19/

 

https://twitter.com/user/status/1298675970363330561

 

Unfortunately this advice is for 2 weeks only, then advises graded exercise afterward.

It's getting incredibly frustrating seeing all the worst possible mistakes being made many times over while we could actually help medicine avoid all of those mistakes and accelerate research, cutting months, if not years, of wasted efforts. Such a stupid system to reject relevant knowledge presented on a silver plate like that.

All they have to do is listen to the patients. But they just don't want to because medicine still operates like we're in the 15th century and everyone who isn't a medical doctor or a scholar must be an illiterate simpleton. The patients are telling them everything they need to do better and they just spit on it, insist on committing every mistake to its fullest extent.

We could probably save a full calendar year of wasted efforts, and billions in opportunity cost, right here and now by doing this. But nooooooo, medicine has to be by physicians for physicians, nothing can penetrate the bubble.