the least we can do is involve patients in the analysis
December 8, 2021 10:47 AM   Subscribe

Immunologist Dr. Akiko Iwasaki explains the possible mechanisms of long COVID (aka Post-Acute Sequelae of Covid-19, aka PASC) in a October 29, 2021 webinar for the National Institutes of Health. Links to timestamps on: post acute infection syndromes in general; two types of long COVID (including the fatigue syndrome associated with mild infections); disease hypotheses (2 possible causes); treatments for symptoms (including vaccines); three different cohort studies; and on long COVID patient involvement in the research.

For those with long COVID, 45% of cases require a reduction in work load and 22% are unable to return to work.

Dr. Iwasaki covers a lot more, but those should get you started if you don't have time to watch the whole video.
posted by spamandkimchi (14 comments total) 29 users marked this as a favorite
So...if I understand the admittedly early results, half of Covid patients get long Covid?...and then half of those don't see relief from those symptoms (or they get worse)?

That sounds terrible. Why is everyone acting like Christmas is going ahead as normal? Is it just denial based coping?

We have a friend who's high school age Covid patient went from varsity athlete to struggling on long walks. She's not even 18. MAYBE she'll recover some/most/all of her faculties, but maybe not. Why roll the dice with a healthy future with these odds?
posted by Reasonably Everything Happens at 11:44 AM on December 8, 2021 [18 favorites]

So...if I understand the admittedly early results, half of Covid patients get long Covid?...and then half of those don't see relief from those symptoms (or they get worse)?

I don't want to sound like I'm minimizing long COVID--by all accounts it's awful and unending and scary as hell, and I wish it were not a thing. But I do want to point out that there are other diseases in the world with an acute infection stage and then a long tail of recovery. I've experienced a couple; I imagine most everyone has, to some degree. I had a bad case of mononucleosis in high school that took six months to come back from completely, but I did come back 100%. Similarly, meningitis at 26 was a goddamn nightmare, and I didn't get back my endurance for any sort of physical activity for nearly a year. Diseases linger; our bodies need time to heal completely. Sometimes that time is measured in months or even years. COVID is such new and unexplored territory that we don't know much of anything about its long-term effects. We're still dealing mostly with anecdata, because immunologists have been so completely focused on vaccination and treatment of acute symptoms that they're just now starting to publish data about PASC and long-term effects of the disease.

All of which to say: it's way too soon for doom and gloom. There are a lot of folks who are chronically ill now in a way that was totally unknown two years ago. That doesn't mean they're going to stay ill forever.
posted by Mayor West at 12:04 PM on December 8, 2021 [23 favorites]

It took my dad eight months to recover from COVID but he did eventually. It took me about eight months to recover from bronchitis in 2010 after a trip to Hong Kong, Korea and Japan (which thinking about it, I could have gotten SARS then. I was acutely ill for about a week but sluggish afterward for almost a year).

That's just more anecdata, but in line with what Mayor West said. Incidentally here's another article from VOX today, about COVID and mental health:
posted by subdee at 12:20 PM on December 8, 2021 [3 favorites]

Why is everyone acting like Christmas is going ahead as normal? Is it just denial based coping?

Yes. Also, vaccines are around so hopefully less people are getting long Covid, so. Well, one hopes, anyway.

I made a friend online this year that has long Covid and she ended the friendship pretty much because she didn't have the energy to maintain it and she's got so much brain fog she can't really work too well any more. That scares the shit out of me. She got it early on in the pandemic. I have also watched a fair number of Arne and Carlos videos on YouTube (knitwear designers in Norway) who got Covid on a cruise in February 2020. Arne had a light case but Carlos got long Covid and talked a lot about the brain fog, getting medical leave from having to work, having to go to a rehab hospital (which was actually reasonable to do in Norway) in order to recover and whatnot. I think he's okay these days, but in Norway he had the resources that Americans and a lot of other countries are not going to get for recovery.
posted by jenfullmoon at 12:22 PM on December 8, 2021 [5 favorites]

So...if I understand the admittedly early results, half of Covid patients get long Covid?...and then half of those don't see relief from those symptoms (or they get worse)?

Pretty heterogeneous in how it’s defined, though (and in the exact population being studied). It’s clear enough that it is fairly common for people not to feel fully recovered in *some* way even after weeks or months, but that encompasses a wide range of possibilities.
posted by atoxyl at 12:31 PM on December 8, 2021 [3 favorites]

Lingering (but ultimately self-resolving) and permanent sequelae of infections both feel like things we’ve sort of forgotten about because we’ve been so successful in preventing or treating the common ones that used to be really bad.
posted by atoxyl at 12:41 PM on December 8, 2021 [9 favorites]

I really look forward to Iwasaki's research with Jan Choutka on post acute infection syndromes in general that looks at five general categories of signs & symptoms
1) exertion intolerance, fatigue,
2) flu-like symptoms,
3) neurological/neurocognitive symptoms
4) rheumatologic symptoms (joint pain)
5) trigger-specific symptoms

I am hopeful that the sheer amount of data and research on covid and growing attention to long covid will aid people with chronic fatigue syndrome and other similar diseases.
posted by spamandkimchi at 12:50 PM on December 8, 2021 [12 favorites]

The first M. Peluso et al at 27:56 is what's the chilling note for me. She notes that IL-1a falls and IL-6 continues high in PASC patients and notes the similarities to the patterns in myalgic encephalomyelitis. I'm a complete layperson (with ME) but I believe it takes a long time (see Figure 1) for people with ME to get stuck in that pattern. That the steadily high IL-6 is already being seen in the amount of time elapsed thus far is worrisome to me with the little bit of knowledge I have. I'd like to know more about that.

Reasonably Everything Happens, the people who are most likely to recover from ME are children and adolescents. So if PASC shares that with ME, as it seems to share other things, your friend's daughter is better placed than most. I'm sure you were just noting this to show the dramatic change in her health, but anything wears her out is not a good idea in terms of cultivating recovery.
posted by jocelmeow at 12:55 PM on December 8, 2021 [1 favorite]

One interesting thing I read about concussions is that the notion of recovery is itself a problematized one. Some researchers have recently argued that one does not truly recover and shown that even in mild concussions (a misnomer), there are measurable impairments years later despite a patient's subjective feeling of having recovered. So recovery entails a sort of implicit norm that when talking about a chronic disease, at least such as with TBI, that the scientific understanding is still in flux. So I'm inclined to think this question would apply to something like PACS as well, ie. we cannot critically determine what recovery even is unless scientists actually do basic science studies and gain a full understanding of a disease over the long term; it's like a bootstrapping problem.
posted by polymodus at 1:00 PM on December 8, 2021 [4 favorites]

So...if I understand the admittedly early results, half of Covid patients get long Covid?...and then half of those don't see relief from those symptoms (or they get worse)?

There have been a few different studies, showing different results, partly depending on how long after acute illness you look at patients. A year out, the numbers are probably a little lower, but still very signigicant. I sure hope we see some more quality research on this soon, but no matter what the actual numbers are, it's pretty clear that long Covid is a much more significant risk for anyone under about 60 than dying from Covid, as this study lays out.

Our public health institutions have completely failed to communicate this risk or account for it in setting public health measures, leaving millions of people with significant disability, likely long term or permanent in many cases. We knew long Covid was likely because SARS-Covid-1 caused the same thing (not to mention the many other post-infectious diseases).

But this isn't a surprise, given the completely inadequate response to ME/CFS (previously known as chronic fatigue syndrome) and other similar diseases. For those of us with some experience in the area, it's been clear that this would happen since the start of the pandemic. It's painful to watch.
posted by ssg at 1:03 PM on December 8, 2021 [19 favorites]

Both my wife and I had COVID in late March 2020. Each of us are dealing with long COVID.

I am not too bad and can work full time (from home, at a desk job), but pretty much ANY kind of exertion just wrecks me both physically and mentally. I used to be a cyclist, and had done my first century in summer 2019. Since then, I haven't gone more than 8 miles in one ride. Our daily walks to drop our kid at school have given way to the car line. And after I raced my kid across the football field (only 200 yards of running), I laid in bed for the rest of the day. Each night we run out of gas and go to sleep by about 8:45. None of those things are debilitating but they are demoralizing as hell. I've gained probably 40 pounds and have pretty much given up the dream that I can get back on the bike in any meaningful way.

My wife has it way worse: random tachycardia even while totally at rest, constant nerve pain, regular fatigue that keeps her running at about 65% of "normal" times, daily breathing exercises to get back to regular full breaths, and just a general sense that any weird thing can happen on any day for no reason at all. She goes to a long-haul clinic at Northwestern University in downtown Chicago and she has seen world-class doctors in pulmonology, neurology, cardiology, rheumatology, and physiology. She has had CT scans and MRIs and ultrasounds and every kind of blood test you can imagine. All of the doctors agree that there's no long-term physical damage to her body that they can find and so in that sense she is "healthy." And all of them agree that she is all messed up, too. After swapping around prescriptions and therapies and throwing stuff at the wall, the collective wisdom at this point is [shrug emoji]. Despite a full-time clinic that just sees long haulers, there aren't any true solutions yet. She has made a number of friends in the same boat as her, and it's so frustrating to see these people suffer through trial after trial to no avail.

And of course real life hasn't stopped at all. Our kids still need help with homework and rides to activities and dinner on the table and support through their own stuff. It made us realize the extreme privilege we had back before we got sick. And we still have an awful lot - money to throw at problems, family and community support, and super helpful kids who understand and sympathize with our "good enough" approach.

I cannot imagine how hard this must be for long-haul families where both parents have to work full-time in active, physical jobs. It breaks my heart to think of their daily suffering, and it seems like the problem will only become more acute as more people "recover" from COVID only to continue right into long COVID. Here's hoping that the smart doctors and researchers working on it figure something out.
posted by AgentRocket at 6:43 PM on December 8, 2021 [27 favorites]

AgentRocket, so sorry, it’s so hard.

In chronic illness circles we’ve been watching the development of long covid with horror, my fibromyalgia is likely the result of an infection in 2017 (combined with other things).

One silver lining is the increased research into fatigue, every medical professional I’ve seen has never been able to help with this or even take it as seriously as pain. One study out of the UK. [Guardian]
posted by ellieBOA at 1:25 AM on December 9, 2021 [8 favorites]

My mother and brother both have Lyme disease, and have been dealing with that for over a decade now. Mom recently discussed the attention being paid to long Covid now and how she sees it as a boon - "because there are a lot of OTHER diseases with long-lasting effects, and maybe they'll get to us next!"
posted by EmpressCallipygos at 9:33 AM on December 9, 2021 [5 favorites]


Boy do I feel you.

Almost 2 years out and I can tell you the air quality just by how long it takes me to put together a complex thought. And that feeling that weird shit can happen at any time? Like that's just a thing that I low-key have on my mind at any given moment. Shit just goes wrong with my autonomic nervous system and all of the sudden my heart is racing and my hands are blue, and like... it's because someone in my audio mixing class played a song with a very boomy kick drum doing a weird pattern for 30 seconds. Or like occasionally limbs just feel wrong. Not hurting, not tired, just wrong.

As near as I can tell most people in my life think I'm almost all the way better because I just decided that this is normal now and so sort of plan around it. But I'm not better, and people get to act all surprised when I casually mention "oh yeah, I stop being able to process people talking if I have kind of a long day" or mention "Oh, I lost Saturday, I missed my nap Friday afternoon and so was paying for it."

I think it's also hard for people to really GET that we just don't know if this is one of those things with a longer recovery or one of the things where this is just how we are now. So every day is a giant mindfuck of constantly trying to figure out if we're getting better, or worse, or if maybe the weird thing our stomach is doing now is part of long-haul or maybe we just ate something we shouldn't, or whatever. That's on top of the general symptoms of Long Haul COVID, the grieving for our lost health, and all the terrible crappiness that the 20s is inflicting on everyone in general.
posted by Gygesringtone at 5:41 PM on December 10, 2021 [7 favorites]

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