Long Covid in the media and social media 2022

I am not sure about that. When we used penicillamine for rheumatoid a lot of patients lost their sense of smell and taste but they did not get malnourished. They just complained food was very dull.

 

That's what I was thinking of, wasn't sure if it had been updated since. I think it was supposed to be a "living guideline"?

Coma is technically alive.

 

National Geographic: Can this 19th-century health practice help with long COVID?
https://www.nationalgeographic.com/...-century-health-practice-help-with-long-covid

Doctors used to swear by the slow recovery period known as convalescence. Some experts say embracing it again could offer benefits for an array of long-term illnesses and injuries.
...
Pacing is important because many patients experience “post-exertional malaise,” in which a spurt of activity leads to worsened fatigue, says Alba Miranda Azola, co-director of Johns Hopkins’ Post-Acute COVID-19 Program and a co-author on the statement. “We have found that patients with post-viral fatigue that push through and enter a crash cycle have overall functional decline.” Cognitive tasks can also produce a crash, says William Brode, medical director of the Post-COVID-19 Program at University of Texas, Austin. He’s seen students laid out for three days after the stress of a term-paper deadline. “And they may have not even left the dorm room.”
...
In their clinics, Austin’s Brode and Hopkins’ Azola educate patients with fatigue in energy management techniques, borrowed in part from chronic fatigue syndrome. Traditionally, “if you break your ankle, [the approach is] pain is gain, let’s go, let’s get the function back,” Brode says, adding, “We’re doing the opposite of that here. … it’s about finding where that wall is and then backing down and resting. I tell patients, respect the wall.”​

Although it mostly glosses over the thorny issue that this is mostly pie-in-the-sky since most people simply can't do that, it at least mentions it in passing:

Whether patients can afford to take more time off or work reduced hours is another matter. Advocates for long COVID-19 patients like U.K.’s Fiona Lowenstein have called for greater disability benefits and sick leave.

For Krienke, learning about Victorian convalescence helped her adjust to the pace of her cancer recovery. “Because of 20th century advances in medicalized rehabilitation, we tend to think of recovery as a kind of work. You have to push yourself to feel better,” she notes. “For me, discovering even the word ‘convalescence’ helped me understand what was happening to me both physically and psychologically,” says Krienke. “Long recovery does not have to mean failure. It can be a slow, but beneficial process.”
​

Those are benefits only a privileged few will enjoy. For most people this is an issue of basic survival.

Relatively fine article on the issue of convalescence and some discussion of post-exertional malaise, however it is entirely from the perspective of medicine and physicians, it completely erases the fact that this is a massively controversial issue where the patients are on the side of pacing and convalescence and medicine is pretty much beating us over the head insisting the opposite.

The article mentions the early push for exercise rehabilitation in LC and how it failed. However it completely missed the fact that this is the current paradigm for most of us and that it's ongoing for Long Covid as well.

If anything is "borrowed" from CFS it's the patients who are responsible, and that it's long been a disastrous tug-of-war between patients and the dogmatic application of the paradigm of psychological rehabilitation.

So pretty disappointing. It's presented as a historical issue with not much current relevance, other than a passing mention that this is a lesson borrowed from us. Frankly it's whitewashing, despite otherwise presenting the historical context rather well.

I think there is a sort of cheap paywall where the body of the text has a few CSS properties set to disable scrolling. If you press on F12 to open developer tools, find the <body> tag and disable the properties for position:fixed, scrolling:disabled and top:some negative value. Or not, I'm certainly not advising how to work around a paywall or anything like that.

 

More than enough to do better than the first draft, but I wouldn't expect that much from NICE.

 

https://www.youtube.com/watch?v=3VKtn-2YiZk

Disappointing and misinformed. It's basically a puff piece on the Mt Sinai Hospital rehabilitation program, centered on a patient who eventually recovered by "increasing his tolerance for exertion" with an exercise program. He says he's recovered and sometimes works 16h days but still has symptoms like migraines and severe fatigue, as long as he manages his energy. Which sounds like an incomplete remission.

It ends in a "everybody lived happily ever after" tone, as if this is a typical LC experience and doesn't really think about those who don't. It has some good bits of info but really misses the point. And to be limited to single stories at this point is ridiculous when millions are affected, there is no representative experience of this and this story particularly isn't. But the CDC said they wouldn't have info for another 2 years. Somehow. So there's very little to work on if journalism can't step up.

 

I've been watching Long Hauler forums and almost all seem to regain the ability to taste and smell relatively quickly while their other ME-like symptoms (eg, PEM, cognitive dysfunction, OI, gut issues) persist or worsen. This evolution of symptoms was picked up in the Dubbo studies:

All of the Long Haulers say that they would instantly give up their sense of smell and taste in return for a remission of their ME/CFS-like symptoms.

 

Long Covid: the invisible public health crisis fuelling labour shortages

"Many people with lingering symptoms of Covid-19 have been forced to leave the workforce entirely. Can businesses create policies to help?"

https://www.ft.com/content/8b9166af-2e85-4429-ab1f-362c189e46f2

 

Medscape has had some pretty good articles on both ME and Long Covid, so I have no idea how they managed to come up with this in their Long COVID Quiz:

Proposed primary care guidelines for the diagnosis of long COVID suggest that if COVID symptoms persist without other etiology that reasonably explains them, and complementary test results are unaltered, long COVID diagnosis is confirmed. If fatigue persists as the main symptom, the team should evaluate the patient against classification criteria for chronic fatigue syndrome. A diagnosis of chronic fatigue syndrome associated with long COVID-19 may suggest physical activity programs, adapted guidelines to increase progressive resistance training, and evaluation of psychological factors.
______________________

Mod note: This post has been copied and the following discussion it triggered about fatigue has been moved to a new thread:
Fatigue - is it the main symptom of ME/CFS and Long Covid? Discussion thread

 

That article was disappointing. I saw some comments praising it and frankly it shows how low the bar is. It's completely framed as a new and unique phenomenon, other than a passing mention that disabled people in general don't have it easy. Very lazy, frankly.

 

I guess the editorial board of the Lancet is not aware of the role that the checks notes Lancet did in denying the health consequences of even mild infections, laughing it off as a small boo-boo and calling everyone who reports otherwise a dirty rotten activist. Is Richard Horton unable to see any connection to what he did and what his organization is saying here? Does he simply not care? Maybe someone has to make him care so he can know what's important because he clearly can't figure this out by himself.

Because this is like a fossil fuel company whining about climate change affecting their business and how that's so bad. The Lancet decided to keep on board the person most responsible for the anti-vaccine movement, and without punishment for being terrible at his job, he just did a similar failure. And now he's looking back at it, unable to see any connection to what he did, to what the Lancet did, because there's a board and Horton didn't do this alone.

It's the elephant in the room alright, and the circus leader who has been instrumental in keeping it in the same room, telling everyone to just not pay attention to it, has now gotten too large to ignore.

What if The Lancet hadn't screwed this up? What if they had been able to insist to the PACE researchers that they should publish their research findings as they were, not the fraudulent interpretation and manipulation they needed to turn a dud into a lie, which the Lancet knew and abetted?

Well, we won't know, we're still stuck at the same place because of ideologues like Horton who can say things like "half of all research is wrong and should be unpublished" but never applies it to his own, because he is soooo perfect. Ugh, sorry.

https://twitter.com/user/status/1513237807216607238

 

Hong Kong team develops test for long Covid so recovered pts can tell if trouble lies ahead:

https://www.todayonline.com/world/c...ng-team-develops-test-risk-long-covid-1870026

 

To me, it looks like marketing to sell an expensive, very expensive, supplement regime, and their numbers do not sound 'honest'.

 

Sounds like early testing for pwME back in 1999.

 

https://twitter.com/user/status/1513449351116476418

 

This is a great interview by Amy Proal with Dr. Jim Heath. Well worth the watch. He discusses the four factors they found to be predictive for long covid at time of acute infection. The most interesting to me is autoantibodies which he says are at subclinical levels, meaning most labs would not pick them up at the thresholds they test for. Their team plans to do more work looking at how autoantibodies effecting B cells in long covid.

He talks too about how single cell sequencing has been a sea change for study of biology and that in the past two years these tests which used to be exotic and only at a few labs have become commodities, and that all this data will change science. He said that data analytics are the current limiting factor, but that this too should change.

https://www.youtube.com/watch?v=Cg2VYqB-TZU

 

'Subclinical' actually means 'causing no symptoms' so it would be an unfortunate term.
I have not yet seen evidence that suggests to me that these autoantibodies are relevant.
If you look for autoantibodies you will always find some but unless there is a consistent high level pattern they are likely to be irrelevant.

 

Hope it's OK to copy this from the News in Brief as I think it's not only of regional relevance:

Germany - Zeit Online has a long article on Long Covid including patients' experiences, doctors' responses, and some treatments being tried.

Article here (in German) Thread with some English translation here