Reporting on Long Covid
December 11, 2023 1:09 PM Subscribe
Covering long Covid solidified my view that science is not the objective, neutral force it is often misconstrued as. It is instead a human endeavor, relentlessly buffeted by our culture, values and politics. As energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity. Societal dismissal leads to scientific neglect, and a lack of research becomes fodder for further skepticism. I understood these dynamics only after interviewing social scientists, disability scholars and patients themselves, whose voices are often absent or minimized in the media. Like the pandemic writ large, long Covid is not just a health problem. It is a social one, and must also be understood as such. From Ed Yong in the New York Times (archive link).
Dismissal and gaslighting — you’re just depressed, it’s in your head — are among the worst aspects of long Covid, and can be as crushing as the physical suffering. They’re hard to fight because the symptoms can be so beyond the realm of everyday experience as to seem unbelievable, and because those same symptoms can sap energy and occlude mental acuity. Journalism, then, can be a conduit for empathy, putting words to the indescribable and clarifying the unfathomable for people too sick to do it themselves.
Many long-haulers have told me that they’ve used my work to finally get through to skeptical loved ones, employers and doctors — a use that, naïvely, I didn’t previously consider. I had always imagined that the testing ground for my writing was the minds of my readers, who would learn something new or perhaps even change what and how they think. But this one-step model is woefully incomplete because we are a social species. Journalism doesn’t stop with first-generation readers but cascades through their networks. Done well, it can make those networks stronger.
... Long-haulers saw and predicted the rise of long Covid before credentialed academics did. Many are patient experts who have read the scientific literature on long Covid and M.E./C.F.S. more deeply than many doctors because they are highly motivated to do so. Others are meta-experts who thoroughly understand the community’s desires, needs, history and rifts, and can distinguish reliable voices from grifters. They should be front and center of every story, not merely fodder for anecdotal ledes. Before the pandemic, I mostly interviewed academics with advanced degrees and institutional affiliations. Long Covid taught me to also seek expertise from actual experience, instead of mere credentials.
Dismissal and gaslighting — you’re just depressed, it’s in your head — are among the worst aspects of long Covid, and can be as crushing as the physical suffering. They’re hard to fight because the symptoms can be so beyond the realm of everyday experience as to seem unbelievable, and because those same symptoms can sap energy and occlude mental acuity. Journalism, then, can be a conduit for empathy, putting words to the indescribable and clarifying the unfathomable for people too sick to do it themselves.
Many long-haulers have told me that they’ve used my work to finally get through to skeptical loved ones, employers and doctors — a use that, naïvely, I didn’t previously consider. I had always imagined that the testing ground for my writing was the minds of my readers, who would learn something new or perhaps even change what and how they think. But this one-step model is woefully incomplete because we are a social species. Journalism doesn’t stop with first-generation readers but cascades through their networks. Done well, it can make those networks stronger.
... Long-haulers saw and predicted the rise of long Covid before credentialed academics did. Many are patient experts who have read the scientific literature on long Covid and M.E./C.F.S. more deeply than many doctors because they are highly motivated to do so. Others are meta-experts who thoroughly understand the community’s desires, needs, history and rifts, and can distinguish reliable voices from grifters. They should be front and center of every story, not merely fodder for anecdotal ledes. Before the pandemic, I mostly interviewed academics with advanced degrees and institutional affiliations. Long Covid taught me to also seek expertise from actual experience, instead of mere credentials.
The NYT must be pretty confident in the subscribers they have left to run a piece that throws shit in their own face.
posted by seanmpuckett at 1:19 PM on December 11, 2023 [6 favorites]
posted by seanmpuckett at 1:19 PM on December 11, 2023 [6 favorites]
It seems like maybe journalists should have learned something from AIDS, another disease where community members were often the most knowledgeable about treating and preventing the disease. It doesn’t seem to be mentioned in the article, though the author links to a previous article about immunocompromised people and Covid. Those working on COVID could refer to the ACT UP Oral History Project for more information.
posted by larrybob at 1:22 PM on December 11, 2023 [20 favorites]
posted by larrybob at 1:22 PM on December 11, 2023 [20 favorites]
Ed Yong is a national treasure.
posted by humbug at 1:28 PM on December 11, 2023 [27 favorites]
posted by humbug at 1:28 PM on December 11, 2023 [27 favorites]
Ed Yong is a British-American born in Malaysia who recently moved to Berkeley, California. Not sure where he lived before that, but he was a staff writer at The Atlantic, which is where he wrote most of his Covid reporting and for which he received a Pulitzer Prize for Explanatory Reporting in 2021 for a series on the COVID-19 pandemic. He was born in 1981, so his personal experience came from Covid specifically and his advice to journalists in this essay is based on that. That ACT Up Oral History Project is a wonderful resource, thanks for that larrybob!
(As you can tell, I am a fan. I think his work is important. Thus, I subscribe to his newsletter, which is not on Substack, a detail that I love even though I read plenty on Substack.)
posted by Bella Donna at 1:34 PM on December 11, 2023 [26 favorites]
(As you can tell, I am a fan. I think his work is important. Thus, I subscribe to his newsletter, which is not on Substack, a detail that I love even though I read plenty on Substack.)
posted by Bella Donna at 1:34 PM on December 11, 2023 [26 favorites]
I especially appreciated this insight:
Thank you for posting this, Bella Donna - I have also become a huge fan of Yong's, and I really appreciate the opportunity to read this piece.
posted by kristi at 1:50 PM on December 11, 2023 [26 favorites]
Good journalists maintain a healthy distance from their sources, but this professional standard can morph into callousness: Staying independent can easily become, “I behave how I want and you deal with it.” With long Covid, I bend to accommodate my sources’ needs, not the other way around.I've only begun to register in the last few years what a radical, necessary, healing act it is to listen, and to believe the person you're hearing, and especially, especially, how very many people have been disbelieved, over and over and over and OVER.
Thank you for posting this, Bella Donna - I have also become a huge fan of Yong's, and I really appreciate the opportunity to read this piece.
posted by kristi at 1:50 PM on December 11, 2023 [26 favorites]
Is there any country on the planet that can be said to be handling the current state of COVID "properly"? In other words, is there even an existing, country-wide set of policies that we can look towards as a model? Not a policy paper with a set of recommendations, but a set of rules and recommendations that are in place and working significantly better than the control group (i.e. the rest of the world)?
posted by gwint at 1:51 PM on December 11, 2023 [6 favorites]
posted by gwint at 1:51 PM on December 11, 2023 [6 favorites]
(Also, those last two lines are poetry.)
posted by kristi at 1:52 PM on December 11, 2023 [1 favorite]
posted by kristi at 1:52 PM on December 11, 2023 [1 favorite]
If you want to know how we got to the point we were when the pandemic began, how those of us with ME knew in advance what would happen, check out Hillary Johnson's The Why.
posted by jocelmeow at 1:57 PM on December 11, 2023 [30 favorites]
Journalist Hillary Johnson’s The Why: The Historic ME/CFS Call to Arms packs the story of the CDC’s misdeeds and anti-science agenda regarding Myalgic Encephalomyelitis (ME) into 92 jaw-dropping pages. She describes how the agency botched a critical investigation of a large outbreak in 1985 and, unwilling to change course, proceeded to rename the disease, eagerly characterizing sufferers as hysterics and depressives. For years, the agency either ignored or denigrated important scientific findings being made outside its Atlanta headquarters. CDC scientists also diverted money Congress gave the agency to research the disease to pet projects, then lied to Congress about their progress.If there had been research in post-viral illness research starting then, we might all be writing different stories now.
posted by jocelmeow at 1:57 PM on December 11, 2023 [30 favorites]
Also, the CDC put out ME prevalence data this past week based on the National Health Interview Survey. It found that during 2021–2022, 1.3% of adults had ME/CFS.
posted by jocelmeow at 2:02 PM on December 11, 2023 [4 favorites]
posted by jocelmeow at 2:02 PM on December 11, 2023 [4 favorites]
As an immunocompromised person approaching the beginning of my 4th year of social isolation, Ed Yong is one of the only people on the planet who actually hears and sees us, and I am so incredibly grateful for his work.
posted by hydropsyche at 2:03 PM on December 11, 2023 [30 favorites]
posted by hydropsyche at 2:03 PM on December 11, 2023 [30 favorites]
Social security disability benefits have remained stable throughout the pandemic, which suggests that long COVID is not nearly the problem that elite journalists would like it to be.
posted by Galvanic at 2:17 PM on December 11, 2023 [2 favorites]
posted by Galvanic at 2:17 PM on December 11, 2023 [2 favorites]
Social security disability benefits have remained stable throughout the pandemic, which suggests that long COVID is not nearly the problem that elite journalists would like it to be.
That could be because the SSA isn't - yet - recognizing Long Covid or ME/CFS as disabilities. Please don't ask me how I know because I'm way too fucking tired and in the thick of all of that process right now.
posted by loquacious at 2:23 PM on December 11, 2023 [89 favorites]
That could be because the SSA isn't - yet - recognizing Long Covid or ME/CFS as disabilities. Please don't ask me how I know because I'm way too fucking tired and in the thick of all of that process right now.
posted by loquacious at 2:23 PM on December 11, 2023 [89 favorites]
SSDI requires casework and doctors. If those doctors don't believe chronic disease can exist, good fucking luck getting SSDI, is my understanding.
posted by Slackermagee at 2:25 PM on December 11, 2023 [39 favorites]
posted by Slackermagee at 2:25 PM on December 11, 2023 [39 favorites]
Social security disability benefits have remained stable throughout the pandemic, which suggests that long COVID is not nearly the problem that elite journalists would like it to be.
COVID 19 death rate remains enough to shove life expediencies down multiple years. With Covid 19s ability to kill people with other health problems, I'd naively expect a reapers surplus in disability payments - a lot of dead people who used to get social security resulting in costs going down.
It hasn't. Which means every disabled person Covid-19 killed that wouldn't have died otherwise, an extra person became disabled. Maybe because our practical recognition of disability has quotas, or maybe Covid-19 is crippling as many people as it kills disabled people.
posted by NotAYakk at 2:25 PM on December 11, 2023 [34 favorites]
COVID 19 death rate remains enough to shove life expediencies down multiple years. With Covid 19s ability to kill people with other health problems, I'd naively expect a reapers surplus in disability payments - a lot of dead people who used to get social security resulting in costs going down.
It hasn't. Which means every disabled person Covid-19 killed that wouldn't have died otherwise, an extra person became disabled. Maybe because our practical recognition of disability has quotas, or maybe Covid-19 is crippling as many people as it kills disabled people.
posted by NotAYakk at 2:25 PM on December 11, 2023 [34 favorites]
Social security disability benefits have remained stable throughout the pandemic, which suggests that long COVID is not nearly the problem that elite journalists would like it to be.
Turns out that social security benefits stop when you die.
And "elite" journalists, what the fuck are you talking about?
posted by jeremias at 2:26 PM on December 11, 2023 [44 favorites]
Turns out that social security benefits stop when you die.
And "elite" journalists, what the fuck are you talking about?
posted by jeremias at 2:26 PM on December 11, 2023 [44 favorites]
Social security disability benefits have remained stable throughout the pandemic, which suggests that long COVID is not nearly the problem that elite journalists would like it to be.
Even if SSA was recognizing Long COVID, basing any argument on the number of people who have managed to navigate the truly byzantine labyrinth of the social security disability process is... delusional at best. But thanks for a practical demonstration of the ignorance and dismissive apathy described in the article.
posted by Two unicycles and some duct tape at 2:27 PM on December 11, 2023 [45 favorites]
Even if SSA was recognizing Long COVID, basing any argument on the number of people who have managed to navigate the truly byzantine labyrinth of the social security disability process is... delusional at best. But thanks for a practical demonstration of the ignorance and dismissive apathy described in the article.
posted by Two unicycles and some duct tape at 2:27 PM on December 11, 2023 [45 favorites]
Sounds like someone has never actually spoken to anyone who has applied for SSDI and has no clue how long it takes (and how much people spend on lawyers) before you finally get approved. (from those elite journalists at the AARP)
posted by hydropsyche at 2:28 PM on December 11, 2023 [26 favorites]
posted by hydropsyche at 2:28 PM on December 11, 2023 [26 favorites]
And I'm so, so tired of being tired and in pain all the time. I've had the co-existing symptoms of a full time migraine and headache, constant body aches and pains hovering around a 3-5 out of ten, extreme fatigue and so much brain fog and cognitive decline for something like 2-3 years now.
I really miss just being able to go for a bike ride for fun and not pay for it with PEMS for days/weeks afterwards. Some days I can go for a ride and it's fine. Some days I go for a ride and it puts me in bed for a week and I can barely open my eyes.
I miss being able to even just listen to and enjoy music and not have it feel like I'm doing math homework.
I miss being able to actually have verbal conversations with people and feel like I'm making sense or not losing the plot every other sentence.
posted by loquacious at 2:29 PM on December 11, 2023 [37 favorites]
I really miss just being able to go for a bike ride for fun and not pay for it with PEMS for days/weeks afterwards. Some days I can go for a ride and it's fine. Some days I go for a ride and it puts me in bed for a week and I can barely open my eyes.
I miss being able to even just listen to and enjoy music and not have it feel like I'm doing math homework.
I miss being able to actually have verbal conversations with people and feel like I'm making sense or not losing the plot every other sentence.
posted by loquacious at 2:29 PM on December 11, 2023 [37 favorites]
StatsCan just recently released a report on Long Covid. https://www150.statcan.gc.ca/n1/pub/75-006-x/2023001/article/00015-eng.htm
In it, they document that the risk of Long Covid is cumulative with repeated infections:
https://twitter.com/lisa_iannattone/status/1733236471207772211
Stay safe out there
posted by cfraenkel at 2:46 PM on December 11, 2023 [17 favorites]
In it, they document that the risk of Long Covid is cumulative with repeated infections:
https://twitter.com/lisa_iannattone/status/1733236471207772211
Stay safe out there
posted by cfraenkel at 2:46 PM on December 11, 2023 [17 favorites]
My mother was turned down for SSDI after she was diagnosed with a terminal condition that left her unable to work due to its degenerative nature. She was eventually able to get it, but it took two tries and several years. I would be astonished if everyone who could prove post-COVID disability to the standards of the US government was able to get on disability within a year, say, of becoming disabled. We've got to have at minimum a two year lag.
posted by Frowner at 2:49 PM on December 11, 2023 [47 favorites]
posted by Frowner at 2:49 PM on December 11, 2023 [47 favorites]
Thank you for this. I love Ed Yong.
I’m reading And the Band Played On now — a history of the response to AIDS (mostly from a US perspective) written in the mid eighties, when there was no clear hope in sight. I picked it up because sometimes it helps me regain perspective when I can understand my culture’s failure through another, less personally grueling lens. Some of those who are struggling with complicated pandemic grief may find some value in it (although fair warning that there is a weird and sensationalist through line about one specific, named AIDS patient that has really not aged well either scientifically or ethically).
posted by eirias at 2:51 PM on December 11, 2023 [4 favorites]
I’m reading And the Band Played On now — a history of the response to AIDS (mostly from a US perspective) written in the mid eighties, when there was no clear hope in sight. I picked it up because sometimes it helps me regain perspective when I can understand my culture’s failure through another, less personally grueling lens. Some of those who are struggling with complicated pandemic grief may find some value in it (although fair warning that there is a weird and sensationalist through line about one specific, named AIDS patient that has really not aged well either scientifically or ethically).
posted by eirias at 2:51 PM on December 11, 2023 [4 favorites]
What a mensch Ed Yong is.
posted by ssg at 3:21 PM on December 11, 2023 [5 favorites]
posted by ssg at 3:21 PM on December 11, 2023 [5 favorites]
That newsletter is really great. In addition to everything else wonderful that he does, Ed Yong takes beautiful pictures of birds.
posted by Don Pepino at 3:26 PM on December 11, 2023 [6 favorites]
posted by Don Pepino at 3:26 PM on December 11, 2023 [6 favorites]
A thought keeps occurring to me.
Governments worldwide showed us unequivocally over the course of the past few years that human life matters less to them than economic abundance for themselves and their peers. That, when given the choice between preserving human life and making money for themselves, they will choose the latter.
And now they know how to profit from a massive, worldwide pandemic.
So, why do we trust them with biological weapons?
posted by MrVisible at 3:52 PM on December 11, 2023 [4 favorites]
Governments worldwide showed us unequivocally over the course of the past few years that human life matters less to them than economic abundance for themselves and their peers. That, when given the choice between preserving human life and making money for themselves, they will choose the latter.
And now they know how to profit from a massive, worldwide pandemic.
So, why do we trust them with biological weapons?
posted by MrVisible at 3:52 PM on December 11, 2023 [4 favorites]
Social security disability applications have remained stable during the pandemic, so no, it’s not about recognizing long COVID or the bureaucracy, it’s about a moral panic driven by people like Ed Yong.
Does long COVID exist? Absolutely. Is it the overwhelming national problem Yong makes it out to be? Not a lot of non anecdotal evidence for it.
posted by Galvanic at 6:00 PM on December 11, 2023 [2 favorites]
Does long COVID exist? Absolutely. Is it the overwhelming national problem Yong makes it out to be? Not a lot of non anecdotal evidence for it.
posted by Galvanic at 6:00 PM on December 11, 2023 [2 favorites]
Is it the overwhelming national problem Yong makes it out to be? Not a lot of non anecdotal evidence for it.
Perhaps you are unaware of the many papers and studies establishing the prevalence of long Covid, the degree of disability it represents, the impact on people's lives, and so on, many from governmental-entities like the CDC, the UK ONS, StatsCan? Because the estimates of prevalence vary somewhat, but they vary from the very, very bad level to the truly terrible level. There's no question that long Covid is having a significant impact on a very meaningful percentage of people. That's a major problem on a national and international level.
posted by ssg at 6:09 PM on December 11, 2023 [32 favorites]
Perhaps you are unaware of the many papers and studies establishing the prevalence of long Covid, the degree of disability it represents, the impact on people's lives, and so on, many from governmental-entities like the CDC, the UK ONS, StatsCan? Because the estimates of prevalence vary somewhat, but they vary from the very, very bad level to the truly terrible level. There's no question that long Covid is having a significant impact on a very meaningful percentage of people. That's a major problem on a national and international level.
posted by ssg at 6:09 PM on December 11, 2023 [32 favorites]
Does long COVID exist? Absolutely. Is it the overwhelming national problem Yong makes it out to be? Not a lot of non anecdotal evidence for it.
Actually, I think this claim is exactly backwards. None of the estimated prevalences I've seen from scientific studies are particularly reassuring, given that this disease is so contagious and there are no longer any efforts in place to prevent transmission. But it's very hard for many people to believe it's real because they know so many people whose anecdotal experience of Covid was "I had a cold, it sucked, I got over it." And I mean... that's what you'd expect. Say the incidence of long Covid is five percent -- if our personal experience weren't biased at all, you'd expect nineteen out of every twenty cases you knew about to wind up at "I had a cold." But your personal experience probably is biased, both because your social circle is not a random sample of all people, and because the people who are out telling their stories to you aren't a random sample of all people who have recently had Covid. So you're probably hearing fewer of the bad stories out there. But five percent is a reasonable and fairly conservative estimate, and five percent of everybody is a lot of people and a lot of suffering.
posted by eirias at 8:21 PM on December 11, 2023 [20 favorites]
Actually, I think this claim is exactly backwards. None of the estimated prevalences I've seen from scientific studies are particularly reassuring, given that this disease is so contagious and there are no longer any efforts in place to prevent transmission. But it's very hard for many people to believe it's real because they know so many people whose anecdotal experience of Covid was "I had a cold, it sucked, I got over it." And I mean... that's what you'd expect. Say the incidence of long Covid is five percent -- if our personal experience weren't biased at all, you'd expect nineteen out of every twenty cases you knew about to wind up at "I had a cold." But your personal experience probably is biased, both because your social circle is not a random sample of all people, and because the people who are out telling their stories to you aren't a random sample of all people who have recently had Covid. So you're probably hearing fewer of the bad stories out there. But five percent is a reasonable and fairly conservative estimate, and five percent of everybody is a lot of people and a lot of suffering.
posted by eirias at 8:21 PM on December 11, 2023 [20 favorites]
Stay safe out there
How??? I'm already completely isolated, and the only person wearing a mask, N95 no less, on the few occasions I pick up my own meds at the pharmacy / grocery store. My wife is the same. Are we safe? No, no we're not. We just got through a week-long respiratory infection we managed to bring home regardless (non-COVID, non-flu according to the molecular tests that no one is going to make anymore because there's no money in them as no one really wants to know). I have asthma, which meant there was one night when I went to bed thinking "OK either I'll feel way better in the morning, or we're driving to the ER sometime after midnight so I can spend several rounds on a nebulizer, breathing in Albuterol and probably COVID so I can be back there again in a week or two"
We have a family member joining our household who has *not* been practicing any precautions, and will probably be in an in-person mental health treatment program while staying with us. Can we make them mask up, guaranteed to be the only one in a room filled to capacity with people they're supposed to find commonality with, for possibly six hours a day?
We cannot stay safe. We haven't got a prayer because no one gives a flying fuck.
posted by tigrrrlily at 9:05 PM on December 11, 2023 [34 favorites]
Just wait for the studies comparing the telomeres of people who’ve had the virus to those of matching controls who haven’t.
Covid is throughly adapted to animals that can repair and maintain length of telomeres in many tissues.
The Ageless Bat:
And the result will be that Covid will produce an epidemic of premature aging in many of the people who get it, including many of the people who had it and 'got over it', in my opinion.
posted by jamjam at 11:58 PM on December 11, 2023 [4 favorites]
Covid is throughly adapted to animals that can repair and maintain length of telomeres in many tissues.
The Ageless Bat:
Bats can live a long time, the longest of all mammals relative to their body size. That makes them unique models for understanding aging and the factors that contribute to a species’ life span. Telomeres, protective nucleotide repeats found on the ends of chromosomes but shorten with every cell division, are thought to play a role. For the first time, a new study examines telomere length relative to the lifespans of four bat species sampled in the wild. In the shorter-lived species, telomere length declined with age, but no such trend was observed in bats of the Myotis genus, the current age record holders. These little bats, upon genetic comparison with other mammals, have enriched expression of genes involved in telomere maintenance and DNA repair.We don’t do that except in sex cells and some cells of the immune system as far as I know.
And the result will be that Covid will produce an epidemic of premature aging in many of the people who get it, including many of the people who had it and 'got over it', in my opinion.
posted by jamjam at 11:58 PM on December 11, 2023 [4 favorites]
Oh. Turns out the aforementioned family member, a 17-y-o, "has a cold" coming back from the UK.
But it's definitely not COVID because Sudafed works on it, says one of their moms, the medical writer with the biology PhD.😭🌎🔥
Yeah, we'll just do our best to stay safe???
posted by tigrrrlily at 9:36 AM on December 12, 2023 [5 favorites]
But it's definitely not COVID because Sudafed works on it, says one of their moms, the medical writer with the biology PhD.😭🌎🔥
Yeah, we'll just do our best to stay safe???
posted by tigrrrlily at 9:36 AM on December 12, 2023 [5 favorites]
Yeah, we'll just do our best to stay safe???
I've been living with a similar situation and it's really challenging.
I have a housemate (who is awesome and pretty great, really!) who travels a lot for work and they work as a stage hand and tech for concerts and festivals and stuff, so there have been some dodgy moments.
Like they were at Burning Man this year and they tested on the way home at appropriate intervals and I really appreciated that caution and care.
But last time they came back from some work a few weeks ago they were feeling under the weather and didn't really tell me about it for like 12-24 hours of sharing common spaces, and I basically had to beg them to test, and they ended up testing positive for the first time and caught their first round of the 'rona, and it was super mild for them because they've been vaccinated and the newer strains are probably milder now and all of that.
And they offered me a sincere apology.
So I basically had to quarantine in place in the same house, but since we're all pretty rugged and adventurous individuals we have a lot of skills and tools to make that happen easier than most, especially since we live somewhere fairly rural and have a lot of outdoor space.
Since they're on the road a lot and do things like go to Burning Man they have tools like portable toilets and a minivan set up for vanlife living, and on my side I have a p100 respirator and I keep a stockpile of non-perishable food and large jugs of water in my room and I have a camp stove and stuff like that.
I have my own outside door access to my room and they were even doing stuff like going in and out of their bedroom window to use their portable toilet stuff.
So we were able to self isolate in our own rooms for a bit over 5 days without too much hassle. I can cook outside, pee outside, or use my P100 mask when I need to go inside to use the bathroom for solid waste. And all of this is about as good as it gets for being able to isolate effectively under the same roof.
And as far as I know I didn't catch it, at least not a full on breakthrough case of it. I was testing during this but they were all negative. I'm also vaxxed and as far as I know I haven't caught it again since then.
I do think I had small amount of viral load because I ended up having a ME/CFS kind of flare up a few days later, and as far as I can tell this is in line with how viral exposure and viral loads work, because it's not a simply black or white thing where you either have it or you don't and it's totally possible to get a small amount of exposure and have your immune system fight it off mostly successfully
But with long covid being what it is, it's really difficult for me to tell if I'm getting sick because I pretty much feel sick all the time. My flare up could easily just been the stress and lost sleep of isolating and the effort of going "off grid" like we were doing trying to isolate from each other and negotiate all of that.
But I'm basically terrified of catching it again. If I caught it again it would likely be my 4th or 5th bout with it and it might actually kill me or make my LC stuff even worse, which would not be good. (OTOH there have been reports from other LC folks that they caught it again and... it somehow fixed their LC symptoms? *anecdotal shrug*)
posted by loquacious at 10:16 AM on December 12, 2023 [8 favorites]
I've been living with a similar situation and it's really challenging.
I have a housemate (who is awesome and pretty great, really!) who travels a lot for work and they work as a stage hand and tech for concerts and festivals and stuff, so there have been some dodgy moments.
Like they were at Burning Man this year and they tested on the way home at appropriate intervals and I really appreciated that caution and care.
But last time they came back from some work a few weeks ago they were feeling under the weather and didn't really tell me about it for like 12-24 hours of sharing common spaces, and I basically had to beg them to test, and they ended up testing positive for the first time and caught their first round of the 'rona, and it was super mild for them because they've been vaccinated and the newer strains are probably milder now and all of that.
And they offered me a sincere apology.
So I basically had to quarantine in place in the same house, but since we're all pretty rugged and adventurous individuals we have a lot of skills and tools to make that happen easier than most, especially since we live somewhere fairly rural and have a lot of outdoor space.
Since they're on the road a lot and do things like go to Burning Man they have tools like portable toilets and a minivan set up for vanlife living, and on my side I have a p100 respirator and I keep a stockpile of non-perishable food and large jugs of water in my room and I have a camp stove and stuff like that.
I have my own outside door access to my room and they were even doing stuff like going in and out of their bedroom window to use their portable toilet stuff.
So we were able to self isolate in our own rooms for a bit over 5 days without too much hassle. I can cook outside, pee outside, or use my P100 mask when I need to go inside to use the bathroom for solid waste. And all of this is about as good as it gets for being able to isolate effectively under the same roof.
And as far as I know I didn't catch it, at least not a full on breakthrough case of it. I was testing during this but they were all negative. I'm also vaxxed and as far as I know I haven't caught it again since then.
I do think I had small amount of viral load because I ended up having a ME/CFS kind of flare up a few days later, and as far as I can tell this is in line with how viral exposure and viral loads work, because it's not a simply black or white thing where you either have it or you don't and it's totally possible to get a small amount of exposure and have your immune system fight it off mostly successfully
But with long covid being what it is, it's really difficult for me to tell if I'm getting sick because I pretty much feel sick all the time. My flare up could easily just been the stress and lost sleep of isolating and the effort of going "off grid" like we were doing trying to isolate from each other and negotiate all of that.
But I'm basically terrified of catching it again. If I caught it again it would likely be my 4th or 5th bout with it and it might actually kill me or make my LC stuff even worse, which would not be good. (OTOH there have been reports from other LC folks that they caught it again and... it somehow fixed their LC symptoms? *anecdotal shrug*)
posted by loquacious at 10:16 AM on December 12, 2023 [8 favorites]
I’ve got a close friend struggling to get over covid and I found this article very self-congratulatory and not at all focused on the actual research on post-covid syndromes.
posted by haptic_avenger at 10:42 AM on December 12, 2023 [1 favorite]
posted by haptic_avenger at 10:42 AM on December 12, 2023 [1 favorite]
The most successful person in my family - a very driven medical specialist who was already working too many hours (and raising kids) - has been unable to work for months after developing long COVID. We have no idea whether they will be able to work again.
posted by jb at 10:50 AM on December 12, 2023 [8 favorites]
posted by jb at 10:50 AM on December 12, 2023 [8 favorites]
jb, that is heartbreaking. I am so sorry to hear that. What a nightmare.
posted by Bella Donna at 11:24 AM on December 12, 2023 [3 favorites]
posted by Bella Donna at 11:24 AM on December 12, 2023 [3 favorites]
I found this article very self-congratulatory and not at all focused on the actual research on post-covid syndromes.
Here is his actual writing (format: PDFs hosted on his Drive):
Here is his actual writing (format: PDFs hosted on his Drive):
Fatigue Can Shatter a Person (Jul 2023)posted by Klipspringer at 11:32 AM on December 12, 2023 [16 favorites]
Long COVID Is Being Erased—Again (Apr 2023)
Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases (Sep 2022)
One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood (about brain fog; Sep 2022)
Even Health-Care Workers With Long COVID Are Being Dismissed (Nov 2021)
Long-Haulers Are Fighting for Their Future (Sep 2021)
Long-Haulers Are Redefining COVID-19 (Aug 2020)
COVID-19 Can Last for Several Months (Jun 2020)
studies comparing the telomeres of people who’ve had the virus to those of matching controls who haven’t
Finding people who have definitely been infected isn't hard, but how would one go about finding such a control group? I thought we couldn't positively test for past exposure to the actual virus.
posted by tigrrrlily at 3:13 PM on December 12, 2023
Finding people who have definitely been infected isn't hard, but how would one go about finding such a control group? I thought we couldn't positively test for past exposure to the actual virus.
posted by tigrrrlily at 3:13 PM on December 12, 2023
You could find folks who haven’t, to their knowledge, ever had covid and then test them for presence of antibodies. From what I recall, doctors and scientists were able to distinguish between antibodies from infection an immune response from the vaccines? There’s still a chance that such a person had an asymptomatic case long enough ago that they no longer have infection-derived antibodies, but I would expect the likelihood would be lower - especially if you tested in populations from areas that had more comprehensive covid suppression measures earlier on, so no you could be more confident of the lack of early infection?
posted by eviemath at 4:13 PM on December 12, 2023
posted by eviemath at 4:13 PM on December 12, 2023
It would be very hard to find a definitively never infected control group at this point. Some people will be infected but never develop antibodies or lose them within months. As we get closer and closer to everyone having been infected, the pool of people who don't believe they have been infected (a third of Canadians as of this summer!) and don't have antibodies increasingly includes a lot of people who have been infected and don't have antibodies for various reasons.
For this reason, most studies that want to compare infected people to never infected people use samples stored from pre-pandemic times.
posted by ssg at 4:49 PM on December 12, 2023 [2 favorites]
For this reason, most studies that want to compare infected people to never infected people use samples stored from pre-pandemic times.
posted by ssg at 4:49 PM on December 12, 2023 [2 favorites]
If there had been research in post-viral illness research starting then, we might all be writing different stories now.
posted by jocelmeow
This.
In it, they document that the risk of Long Covid is cumulative with repeated infections:
https://twitter.com/lisa_iannattone/status/1733236471207772211
Stay safe out there
posted by cfraenkel
And this.
posted by Pouteria at 8:07 PM on December 12, 2023 [3 favorites]
posted by jocelmeow
This.
In it, they document that the risk of Long Covid is cumulative with repeated infections:
https://twitter.com/lisa_iannattone/status/1733236471207772211
Stay safe out there
posted by cfraenkel
And this.
posted by Pouteria at 8:07 PM on December 12, 2023 [3 favorites]
Articles like this—especially Yong's output—come from an unfortunate place of essentially delegitimizing psychiatric medicine and psychiatric clinical courses. I've noted in his output a lack and virtual absence of experts such as physicians specialized in consult-liaison, brain-injury medicine, etc. His articles habitually and dismissively portray psychiatric symptoms as "not real" or epiphenomenal using phrases such as "you’re just depressed, it’s in your head." This is an essentialist stance more easily adopted by someone who has not had to treat end-stage psychiatric illnesses. I understand some people's uneasiness with accepting or understanding clinical diagnoses in the absence of highly specific imaging/biomarkers, etc, but that does not mean their reluctance should always exclude such syndromes from treatment. Most headaches, for example, have no objective findings, but we do not typically and automatically dismiss headache sufferer's reports by saying it's "just in their head" and refuse to treat.
I've been a psychiatric hospitalist for many years. Because in our culture, we tend to we over-treat depressive symptoms even the absence of a correct clinical diagnosis of Major Depressive Disorder (MDD), etc, most people rarely see the effects of the now-relatively rare effects of untreated, end-stage MDD, obsessive-compulsive disorders, somatic symptom disorders, less florid psychoses/delusional disorders, etc. I have. These can be "so beyond the realm of everyday experience as to seem unbelievable." People unable to move and their skin becoming necrotic due to inactivity. People wasting away due to food refusal or eating non-food items. People presenting as cognitively impaired to the point of dementia or so monomaniacally focused as to be unable to engage in ordinary or basic social interactions. People so focused on specific locations or limbs in their body to such a degree that they begin wasting at that location, dig through their skn, skull or bones, or the person self-amputates. People, usually with complex trauma or family histories, producing displaced symptoms or such disruptions in cognitive-emotional processing that entire organ systems can present as dysregulated or nonfunctional: they can lose sight, hearing, seize, appear paralyzed or immobilized, compulsively enact patterned or non-patterned movements or gestures, or their ability to ingest or digest/excrete food becomes disrupted partially or completely.
Not every extreme or extraordinary clinical syndrome or symptom is psychiatric. But a surprising number are, but go undiagnosed. Many people can go for years or decades incorrectly diagnosed and under- or un-treated. I have treated into remission people with advanced, end-stage disorders and life-threatening symptoms, where for some their symptom burden and progression took place over decades. Minimizing the extraordinary ability of the brain—our crucial regulatory organ that also creates and embodies the phenomenon of the behavioral-regulatory mind—does many suffering people no favors.
posted by meehawl at 11:45 AM on December 13, 2023 [7 favorites]
I've been a psychiatric hospitalist for many years. Because in our culture, we tend to we over-treat depressive symptoms even the absence of a correct clinical diagnosis of Major Depressive Disorder (MDD), etc, most people rarely see the effects of the now-relatively rare effects of untreated, end-stage MDD, obsessive-compulsive disorders, somatic symptom disorders, less florid psychoses/delusional disorders, etc. I have. These can be "so beyond the realm of everyday experience as to seem unbelievable." People unable to move and their skin becoming necrotic due to inactivity. People wasting away due to food refusal or eating non-food items. People presenting as cognitively impaired to the point of dementia or so monomaniacally focused as to be unable to engage in ordinary or basic social interactions. People so focused on specific locations or limbs in their body to such a degree that they begin wasting at that location, dig through their skn, skull or bones, or the person self-amputates. People, usually with complex trauma or family histories, producing displaced symptoms or such disruptions in cognitive-emotional processing that entire organ systems can present as dysregulated or nonfunctional: they can lose sight, hearing, seize, appear paralyzed or immobilized, compulsively enact patterned or non-patterned movements or gestures, or their ability to ingest or digest/excrete food becomes disrupted partially or completely.
Not every extreme or extraordinary clinical syndrome or symptom is psychiatric. But a surprising number are, but go undiagnosed. Many people can go for years or decades incorrectly diagnosed and under- or un-treated. I have treated into remission people with advanced, end-stage disorders and life-threatening symptoms, where for some their symptom burden and progression took place over decades. Minimizing the extraordinary ability of the brain—our crucial regulatory organ that also creates and embodies the phenomenon of the behavioral-regulatory mind—does many suffering people no favors.
posted by meehawl at 11:45 AM on December 13, 2023 [7 favorites]
Articles like this—especially Yong's output—come from an unfortunate place of essentially delegitimizing psychiatric medicine and psychiatric clinical courses.
Yong's output comes from a place of actually talking to patients and listening to them. Not just long Covid patients, but ME/CFS patients as well. What he has heard from patients comes through loud and clear, which is that the psychiatric claim on ME/CFS has been hugely harmful, has held back research for decades and has significantly harmed many.
Many patients are very understandably angry and want nothing to do with a group of doctors who have done and continue to do so much harm. Right now, there is an inquiry in the UK about a young woman who died from ME, in part due to inadequate care she received from doctors who believed her problem was psychiatric.
Put simply, there is no evidence that long Covid or ME/CFS have psychiatric causes or are amenable to psychiatric treatment. Why should Yong consult psychiatrists about long Covid?
posted by ssg at 1:02 PM on December 13, 2023 [20 favorites]
Yong's output comes from a place of actually talking to patients and listening to them. Not just long Covid patients, but ME/CFS patients as well. What he has heard from patients comes through loud and clear, which is that the psychiatric claim on ME/CFS has been hugely harmful, has held back research for decades and has significantly harmed many.
Many patients are very understandably angry and want nothing to do with a group of doctors who have done and continue to do so much harm. Right now, there is an inquiry in the UK about a young woman who died from ME, in part due to inadequate care she received from doctors who believed her problem was psychiatric.
Put simply, there is no evidence that long Covid or ME/CFS have psychiatric causes or are amenable to psychiatric treatment. Why should Yong consult psychiatrists about long Covid?
posted by ssg at 1:02 PM on December 13, 2023 [20 favorites]
Minimizing the extraordinary ability of the brain—our crucial regulatory organ that also creates and embodies the phenomenon of the behavioral-regulatory mind—does many suffering people no favors.
posted by meehawl
And overselling it, way beyond the evidence, does extraordinary harm.
Which is the current situation.
posted by Pouteria at 3:01 PM on December 13, 2023 [8 favorites]
posted by meehawl
And overselling it, way beyond the evidence, does extraordinary harm.
Which is the current situation.
posted by Pouteria at 3:01 PM on December 13, 2023 [8 favorites]
But it's definitely not COVID...
Well, broken clocks and all. It's Flu A.
posted by tigrrrlily at 3:51 PM on December 14, 2023
Well, broken clocks and all. It's Flu A.
posted by tigrrrlily at 3:51 PM on December 14, 2023
For those interested in a medical, clinical update on Long Covid, this link is an update from three experts in a Grand Rounds discussion at the University of California, San Francisco hosted by Dr. Robert Wachter Long Covid Update You Tube, 1.5 hours, clinical information
posted by effluvia at 4:36 PM on December 16, 2023 [4 favorites]
posted by effluvia at 4:36 PM on December 16, 2023 [4 favorites]
a medical, clinical update on Long Covid, this link is an update from three experts in a Grand Rounds discussion at the University of California, San Francisco hosted by Dr. Robert Wachter
I was skeptical of this due to various public statements Wachter has made, but I thought it was good. If you're interested in whether the researchers are still masking in public places, skip to the last two minutes (yes - even in the face of Wachter pointing out that many infectious disease doctors do not). But the whole thing is informative. Two other takeaways: one said this needs to be a research effort on the scale of anti-cancer and -HIV research. Also, regarding treatments, they said that given the lack of officially approved treatments, they currently refer patients to websites created by people with LC that compile what's worked -- bringing it back to the subject of this post about the importance of listening to patients.
posted by slidell at 8:44 AM on December 17, 2023 [6 favorites]
I was skeptical of this due to various public statements Wachter has made, but I thought it was good. If you're interested in whether the researchers are still masking in public places, skip to the last two minutes (yes - even in the face of Wachter pointing out that many infectious disease doctors do not). But the whole thing is informative. Two other takeaways: one said this needs to be a research effort on the scale of anti-cancer and -HIV research. Also, regarding treatments, they said that given the lack of officially approved treatments, they currently refer patients to websites created by people with LC that compile what's worked -- bringing it back to the subject of this post about the importance of listening to patients.
posted by slidell at 8:44 AM on December 17, 2023 [6 favorites]
Just because I still think about this post where someone who presumably went to medical school insisted that Long COVID is some form of mass psychosis:
Muscle abnormalities worsen after post-exertional malaise in long COVID
Muscle abnormalities worsen after post-exertional malaise in long COVID
A subgroup of patients infected with SARS-CoV-2 remain symptomatic over three months after infection. A distinctive symptom of patients with long COVID is post-exertional malaise, which is associated with a worsening of fatigue- and pain-related symptoms after acute mental or physical exercise, but its underlying pathophysiology is unclear. With this longitudinal case-control study (NCT05225688), we provide new insights into the pathophysiology of post-exertional malaise in patients with long COVID. We show that skeletal muscle structure is associated with a lower exercise capacity in patients, and local and systemic metabolic disturbances, severe exercise-induced myopathy and tissue infiltration of amyloid-containing deposits in skeletal muscles of patients with long COVID worsen after induction of post-exertional malaise. This study highlights novel pathways that help to understand the pathophysiology of post-exertional malaise in patients suffering from long COVID and other post-infectious diseases.posted by hydropsyche at 5:28 PM on January 9 [4 favorites]
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This is a hard read.
posted by mhoye at 1:16 PM on December 11, 2023 [27 favorites]