The Atlantic: Long Covid is everyone's problem, 2021, Ed Yong

[Kalliope]

Split from Possibility of ME or PVFS after COVID-19, Long Covid


The Atlantic Long COVID Is Everyone's Problem by Ed Yong

quote:
One of the biggest misconceptions about long COVID is that it is entirely new. The SARS-CoV-2 coronavirus may have emerged in 2019, but many infections can lead to similar long-term symptoms. Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS). Although long COVID isn’t identical to any of them, the overlaps are substantial. “There are likely several things unique to COVID-19, but we’re not starting from scratch,” McCorkell told me.

For example, many long-haulers have the hallmark symptom of ME/CFS—post-exertional malaise, in which mild bursts of activity trigger dramatic crashes. Clusters of ME/CFS have followed many disease outbreaks, including the original SARS epidemic, in 2003. And when the pandemic began in 2020, ME/CFS researchers and patients saw long COVID coming before anyone else did. “For years, we’ve been shouting from the rooftops that this is something that happens after an infectious onset, but it’s been hard to get people to pay attention,” Michael VanElzakker of Harvard, who is one of the few scientists to study the condition, told me. Much like long COVID, ME/CFS has been trivialized as a psychological condition, its patients mocked and its researchers underfunded. “It’s a terrible outrage,” Maureen Hanson, a molecular biologist at Cornell who also works on ME/CFS, told me. “If we had a better understanding of it, we’d be ahead of the game” with long COVID.

 

[Sean]

“If we had a better understanding of it, we’d be ahead of the game” with long COVID.

One of the greatest lost opportunities in modern medicine.

We could have been 30, even 50 years ahead by now, on this issue. But we are not.

That situation did not come about by accident.

 

[Nightsong]

The Atlantic Long COVID Is Everyone's Problem by Ed Yong

a now-discredited study called the PACE trial.

It warms my heart to see that in the pages of a major publication.

 

[Solstice]

The article is so good it would warrant it's own topic imo.

 

[Jacob Richter]

The article is so good it would warrant it's own topic imo.

It really is excellent. I've emailed the author today to say so - power to his elbow.

I'm not aware of any comparable long-form journalism in the UK press on this or related topics. This kind of deep, rigorous investigative journalism which goes beyond sound bites just seems to be absent when it comes to ME/CFS or long COVID.

 

[rvallee]

Edit: GREAT interview, worth watching

 

[Wits_End]

The Atlantic Long COVID Is Everyone's Problem by Ed Yong

When I click on the link, I get the heading: "Long-Haulers Are Fighting for Their Future" - I guess it's been changed.

 

[Peter]

One of the greatest lost opportunities in modern medicine.

We could have been 30, even 50 years ahead by now, on this issue. But we are not.

That situation did not come about by accident.

A brilliant article.

And just very sad in perspective of ME/CFS, the 50 years gone by and so little investment and so much pseudo.

It will be exiting to witness the long-Covid approach in time to come, and just hopeful that the magnitude, the optimal conditions for proper studies and science will gain knowledge that in some way may impact ME in a positive way to. So far it’s been a 50 years walk in a dark desert, but maybe, just maybe medicine and responsible politicians can’t run away from the consequences of a pandemic?

 

[Ravn]

The Atlantic Long COVID Is Everyone's Problem by Ed Yong

Excellent article.

"What we really need are well-informed patient researchers sitting with NIH officers reviewing grants,” Putrino told me.

This.

 

[Hutan]

I've been thinking today that as the Long Covid problem grows, and sufferers can no longer be tidily swept under the psychogenic mat, it might actually be the health insurance companies who call the loudest for solutions.

 

[Trish]

I've been thinking today that as the Long Covid problem grows, and sufferers can no longer be tidily swept under the psychogenic mat, it might actually be the health insurance companies who call the loudest for solutions.

I hope that doesn't mean another decade and more of PACE like rehab studies. They are already getting funded and happening in the UK.

 

[Braganca]

Interesting he called out the studies done on post ICU as being not a good choice of population to study for long covid, since OMF also made this choice to fund a post-ICU study, which I personally was disappointed by, and felt was a waste of funding.

 

[Fainbrog]

I've been thinking today that as the Long Covid problem grows, and sufferers can no longer be tidily swept under the psychogenic mat, it might actually be the health insurance companies who call the loudest for solutions.

Is a really good article and refreshing to see.

Your point about insurance companies is interesting, and you may well be right.

As someone in the UK who went though a hellish insurance claim process for Income Protection/Permanent Health Insurance (I know am lucky to have such a policy and even luckier having been able to claim successfully [for now], and timed just right before Covid set in too much), I can imagine numerous crisis meetings about their exposure on LC and by association, rising cases of ME. In the short term they will no doubt be working out ways to assess people in suitably barbaric ways and employing rehab providers to get people back to work.

Do however, wonder if the numbers of policies that actually cover chronic illness is quite low (the policy I took out 20 years ago with my first mortgage specifically excludes chronic illness), unless it's part of a larger employer scheme, but still likely exposure could be huge.

Anyhow, there's probably a thread I need to write elsewhere on the whole process as it was horrific..

 

[Fainbrog]

Is a really good article and refreshing to see.

Your point about insurance companies is interesting, and you may well be right.

As someone in the UK who went though a hellish insurance claim process for Income Protection/Permanent Health Insurance (I know am lucky to have such a policy and even luckier having been able to claim successfully [for now], and timed just right before Covid set in too much), I can imagine numerous crisis meetings about their exposure on LC and by association, rising cases of ME. In the short term they will no doubt be working out ways to assess people in suitably barbaric ways and employing rehab providers to get people back to work.

Do however, wonder if the numbers of policies that actually cover chronic illness is quite low (the policy I took out 20 years ago with my first mortgage specifically excludes chronic illness), unless it's part of a larger employer scheme, but still likely exposure could be huge.

Anyhow, there's probably a thread I need to write elsewhere on the whole process as it was horrific..

And, yes, I'm still bitter about the process, in case it didn't come across as such

 

[Braganca]

Do however, wonder if the numbers of policies that actually cover chronic illness is quite low (the policy I took out 20 years ago with my first mortgage specifically excludes chronic illness), unless it's part of a larger employer scheme, but still likely exposure could be huge.

I had a Cigna long term disability policy which I fought very hard for benefits from during 2014 — 2018. I was cut off and had to appeal 3 times. It didn’t specifically cover chronic illness, it just covered anything that caused you to be permanently unable to work. I appealed using “CFS” diagnosis as that’s what US doctors called ME. It had a time limit though on mental health conditions so I had to be very careful in submitting records and documenting any depression or anxiety as secondary to CFS. Ultimately, they paid me for 3 years and then they offered me a settlement to go away. I was very lucky to get anything — many people do not. I did as many objective tests as I could (qEEG, CPET, tilt table). I’m sure for Long Covid sufferers it will be same battle.

 

[Sean]

I've been thinking today that as the Long Covid problem grows, and sufferers can no longer be tidily swept under the psychogenic mat, it might actually be the health insurance companies who call the loudest for solutions.

Follow the money. It will ultimately be the bean counters and actuaries who bring the axe down on the BPS lark. It just doesn't pay off.

 

[rvallee]

Excellent article.

This.

Speaking of: