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

I posted an article on this above but might as well post the source. Not sure it requires its own thread since it's an update, not a formal paper.


Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network — United States, March–June 2020

https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm

Although as usual the problems of unasked questions:

This obsession with believing that too many symptoms is inconvenient is not looking good here, really hampering good science.

 

There was a weird report on local news last night in French Canada. It featured two patients whose only symptoms was loss of smell. And that's it. It was specifically about "long-haul" and meant to warn about the fact that there is concern for more than deaths, especially with young people.

And although I don't doubt that it's not only problematic, possible to eat spoiled stuff by accident, but certainly demoralizing, it's really odd to focus only on loss of smell.

So that was weird.

 

A Doctor Who Specializes in Long-Term COVID-19 Effects Is Alarmed by What He Sees

https://nymag.com/intelligencer/amp...-the-alarm-on-long-term-covid-19-effects.html

Hmmm. Doublethink.exe not responding.

Our health care systems are very adept at not taking care of many times more people facing the same. Decades of practice not taking care of us. The biggest challenge will come not only from starting this, but the realization that many times more people have already been failed, making the challenge even worse than it seems.

 

http://www.mimpractice.com/drmark

I came across links to these blogs and podcasts in an ME/CFS patient organisation newsletter. I haven't read them or listened to them.

http://www.mimpractice.com/blog/2020/5/30/coronavirus-update-blog

http://www.mimpractice.com/podcast/2020/5/26/dr-marks-coronavirus-update-25-may-2020

http://www.mimpractice.com/podcast/2020/4/14/coronavirus-issues-in-chronic-fatigue-syndrome

http://www.mimpractice.com/blog/2020/4/4/qfjrte96mfvux1zr90toj2v71bobym

http://www.mimpractice.com/blog/202...c-fatigue-syndrome-and-sars-cov-2-coronavirus

 

Canadian media have been rather slow to take this up so it's good to see a few recent ones.


Oakville woman sick with COVID-19 for four months

https://torontosun.com/news/local-news/oakville-woman-sick-with-covid-19-for-four-months

'LIFE-ALTERING': COVID-19 symptoms can linger for months

https://ottawasun.com/news/local-ne...haul/wcm/86d91b3a-70e7-4a68-9b53-e736bc3d92a1

 

Some people with Long Covid are highlighting that a lot of people have had lung symptoms but I recall hearing some people with ME had viral pneumonia. And of course, many others had respiratory symptoms as part of their infection.

 

https://www.usatoday.com/in-depth/n...s-fight-months-lingering-symptoms/5420534002/

Jayne O'Donnell, and Khrysgiana Pineda, USA TODAY

 

Opinion piece in the Guardian by Jemma Kennedy: I'm a Covid-19 "long-hauler". For us, there is no end in sight

Countless others, however, will struggle to manage crippling post-viral symptoms without help. We don’t yet know if post-Covid recovery is worse according to gender, ethnicity or age, but we know that those who are poor or disadvantaged socially will suffer disproportionately. Jobs will be lost, long-term care may be needed. Will long-haulers be eligible for state financial support and free specialist medical care beyond the 12 weeks offered by the NHS? Can we avoid the battle faced by chronic fatigue or ME sufferers, our closest cousins, who have historically found it difficult to a) get diagnosed, b) treated and c) recognised as even having a bona fide disease?

 

Starting to see some "formally" diagnosed as CFS.


Long-lasting COVID symptoms from lungs to limbs linger in coronavirus 'long haulers'

https://www.usatoday.com/in-depth/n...s-fight-months-lingering-symptoms/5420534002/

Also seeing some references lately to "no end in sight", a hashtag that is getting a lot of attention and is a memetic marvel. Also in the recent Guardian article above.

Also some recent comments of post-COVID communities demoralized by doomsaying about the BPS train coming their way. It's a difficult subject because it will be massively harmful, but I don't think anything is gained by it. It will implode on itself naturally, exposing the charlatanism underneath, no matter what happens. Best to keep a neutral language.

There is some benefit that the BPS model isn't as prevalent in the US, which will have by far the most cases. So warning about it makes little difference. Already seeing a lot of discontent from post-COVIDers who are very pissed at the gaslighting so it will work itself out, this is the kind of thing that is too dystopian to warn about, being frank basically sounds insane. Because it is insane.

 

I can understand that. Who wants to be bothering with what seems like political arguments when you just want to get better. Still, sticking your head in the sand won't help, far better to be forewarned than harmed.

Many of the ME patients I have met who are less severely affected won't get involved. They have blindly paid their membership fee to AfME even through the worst of their advocacy. When you tried to discuss it with them you got the dismissive hand wave and an "I can't be bothered with all that". They could still be bothered to whinge about the way the were treated by the system though, just not educate themselves about why it was happening.

Being chronically ill is hard. Finding yourself on the receiving end of the BPS narrative has the potential to be much worse than demoralizing.

 

I don't think this one actually got mentioned, did it?

Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network — United States, March–June 2020

https://www.cdc.gov/mmwr/volumes/69...rOQPI2MGYN48eSjheGv2cpMRX97OeE9_zTAFys3vhqrqo

 

I was listening to TWIV #645 and about 3:45 into the podcast Vincent Racaniello says that he recently spoke with Ian Lipkin (who had Covid back in the March timeframe) and asked him if he had any lingering symptoms and Dr. Lipkin said that "I am always exhausted“.

 

All too familiar. This could all have been avoided, had it not been happening for decades with the same outcomes.


Coronavirus ‘long-haulers’ are losing their jobs, say patients

https://www.thetimes.co.uk/edition/...-are-losing-their-jobs-say-patients-zxlpv2fpf

That weird suggestion would imply that many people have undiagnosed conditions. Which, presenting like this, would explicitly not be diagnosed as they would be in the MUS/BPS/FND void of doom. Either that or medicine makes A LOT of mistakes, which is ironically true.

There's totally an app for that. No services. Just an app. Because maybe it's something else. Maybe it's the wind. Maybe you're just a type A personality. Maybe you think too much. Maybe you don't think at all. Maybe this. Maybe that. Ghosts. Demons. COSMIC RAYS. Just go away, OK?

It's a common trope in sci-fi to make androids sort of crash by making them think about an unsolvable paradigm. Clearly, humans crash on those, too. All you need is ideology and the brain turns to pudding.

 

Perhaps failure to test was a strategic decision.

 

This was just posted to a UK-based list I’m on. I haven’t watched the programmer myself
—-
Channel 4 news programme this evening emphasised exercise being good for people recovering from Covid-19. Much of the film shown is from the national velodrome of Wales in Newport.

For coronavirus patients who have been treated in hospital, being discharged is often not the end of their ordeal.

Especially for the thousands of people who have been critically ill and ventilated, many of them needing extensive rehabilitation.

At the national velodrome of Wales in Newport, a new service has been launched to help people through their physical and psychological recovery.

It is also enabling survivors to share their experiences with others going through the same process.

https://www.channel4.com/news/new-service-launched-in-newport-to-help-covid-patients-recover

More of this report here -
https://twitter.com/user/status/1287845431234441218

 

What could possibly go wrong....

 

... if only there were some other illness with a long list of all the things that go wrong, both in patients and the medical system ...

 

An Open Letter to the COVID-19 Long Hauler Community From a Person with ME/CFS
by Cort Johnson | Jul 24, 2020
https://www.healthrising.org/blog/2020/07/24/open-letter-covid-19-long-hauler-me-cfs/

 

And yet another 'covid long-hauler' with classic ME symptoms:

https://twitter.com/user/status/1287525539859910657