Long COVID comes into the light
March 20, 2023 6:40 AM Subscribe
We’re finally starting to see the truth about the vexing condition. It’s not what we thought. Now, three years later, the research is catching up to the anecdotal reports and the early evidence, and a clearer picture of long COVID has emerged. It turns out that, like COVID-19 itself, a lot of our early guesses about it turned out to be considerably wide of the mark. This time, fortunately, the surprises are mostly on the positive side.
Long COVID is neither as common nor as severe as initially feared. As the U.S. government moves to end the country’s state of emergency, it’s another reassuring sign that, as President Biden put it during his State of the Union address, “COVID no longer controls our lives.”
Lancet article
Results of study from Montefiore Hospital
Report from New York State Insurance Fund, analyzing long COVID claims between January 1, 2020 and March 31, 2022
Long COVID is neither as common nor as severe as initially feared. As the U.S. government moves to end the country’s state of emergency, it’s another reassuring sign that, as President Biden put it during his State of the Union address, “COVID no longer controls our lives.”
Lancet article
Results of study from Montefiore Hospital
Report from New York State Insurance Fund, analyzing long COVID claims between January 1, 2020 and March 31, 2022
My mother and brother both have Lyme disease; they struggle with a frustrating lack of clarity about what their respective triggers may be for a flare-up, what may help them, and whether they will get any relief. The biggest obstacle in their treatment is that there isn't enough research into Lyme and so their doctors simply don't know what to do, and the reason why there isn't enough research is that the number of people with Lyme is small and so the medical community is focusing elsewhere.
My fear is that Long Covid is going to turn into Lyme disease; something that may only affect a small number of people, but will still be affecting them in a very real way, and those people will get shafted because the medical community will start focusing elsewhere again because it's "less prevalent than we thought".
posted by EmpressCallipygos at 7:09 AM on March 20, 2023 [74 favorites]
My fear is that Long Covid is going to turn into Lyme disease; something that may only affect a small number of people, but will still be affecting them in a very real way, and those people will get shafted because the medical community will start focusing elsewhere again because it's "less prevalent than we thought".
posted by EmpressCallipygos at 7:09 AM on March 20, 2023 [74 favorites]
I gotta say that I'm a teensy bit skeptical of the low number of successful New York State Insurance Fund claims being used as evidence that long COVID is not as bad or as prevalent as initially feared. Are we undercounting people who are
(a) not making claims at all because their health care professionals don't believe them?
(b) making claims that are not successful because somebody at NYSIF doesn't believe them?
(I know nothing about the process for making a claim with the NYSIF, but I know enough people who have had trouble getting medical professionals to believe them about symptoms that are a bit diffuse or hard to pin down).
On Wednesday I had to walk about 1.5 miles to pick up my car from the repair shop, and all this week I've been doing some reasonably light packing and cleaning in preparation for a move. My chest hurt all weekend and I've been out of breath all weekend. I'm not showing up on any statistics. I have enough energy to do my job. But my quality of life is impacted all the same. And - I don't know if it's because of this, and because this week (9 months out from having COVID) has been particularly bad for me, but this article seems to imply that long COVID is mostly worth worrying about to the extent that it puts people out of work or causes the economy to screech to a halt.
I also don't love the framing of "a lot of people who think they have long COVID might be having symptoms caused by something else." It's true, but it's also true of so many chronic illnesses with hard-to-pin-down symptoms where the patient gets told "it's just anxiety" for years before they finally get a diagnosis.
I think it's possible that the article's claims will be borne out as we get more long-term data. I hope so. It just feels bad to juxtapose the article's minimization against my own experience.
posted by Jeanne at 7:28 AM on March 20, 2023 [77 favorites]
(a) not making claims at all because their health care professionals don't believe them?
(b) making claims that are not successful because somebody at NYSIF doesn't believe them?
(I know nothing about the process for making a claim with the NYSIF, but I know enough people who have had trouble getting medical professionals to believe them about symptoms that are a bit diffuse or hard to pin down).
On Wednesday I had to walk about 1.5 miles to pick up my car from the repair shop, and all this week I've been doing some reasonably light packing and cleaning in preparation for a move. My chest hurt all weekend and I've been out of breath all weekend. I'm not showing up on any statistics. I have enough energy to do my job. But my quality of life is impacted all the same. And - I don't know if it's because of this, and because this week (9 months out from having COVID) has been particularly bad for me, but this article seems to imply that long COVID is mostly worth worrying about to the extent that it puts people out of work or causes the economy to screech to a halt.
I also don't love the framing of "a lot of people who think they have long COVID might be having symptoms caused by something else." It's true, but it's also true of so many chronic illnesses with hard-to-pin-down symptoms where the patient gets told "it's just anxiety" for years before they finally get a diagnosis.
I think it's possible that the article's claims will be borne out as we get more long-term data. I hope so. It just feels bad to juxtapose the article's minimization against my own experience.
posted by Jeanne at 7:28 AM on March 20, 2023 [77 favorites]
Not... as... severe... I've lost an entire year of my life, which sure okay, but the few months long, weird, somehow-just-trust-me-external-to-my-own-brain anxiety and suicidal ideation dialed up to 111... I can't imagine what "severe" is then. Over a year into it, I drove about 100 miles to see my mom, did some very light chores, rested, drove back and then proceeded to need a day of sleeping 18+ hours and a day of 16+. Not... severe......... and that was with me feeling a lot better.
posted by OnTheLastCastle at 7:35 AM on March 20, 2023 [41 favorites]
posted by OnTheLastCastle at 7:35 AM on March 20, 2023 [41 favorites]
OnTheLastCastle:
It sounds like an absolute nightmare. The article isn’t saying it isn’t, nor that your case isn’t “severe.” It isn’t making any kind of claim about your case at all. It’s saying that severe long-term symptoms are statistically less likely than previously thought, and that the more common long-term symptoms are less severe.
If this is true, this is good news, isn’t it?
posted by argybarg at 7:40 AM on March 20, 2023 [28 favorites]
It sounds like an absolute nightmare. The article isn’t saying it isn’t, nor that your case isn’t “severe.” It isn’t making any kind of claim about your case at all. It’s saying that severe long-term symptoms are statistically less likely than previously thought, and that the more common long-term symptoms are less severe.
If this is true, this is good news, isn’t it?
posted by argybarg at 7:40 AM on March 20, 2023 [28 favorites]
Also, from the Washington Post: Long-covid symptoms are less common now than earlier in the pandemic
And I don't read any of the analysis as minimizing the true harm that millions of people have experienced. It can be simultaneously true that long Covid is a huge problem and that it is smaller than previously feared.
From the Slate article: "I want to be clear about this: Long COVID is a real illness that has dramatically affected many people’s lives. But its prevalence does seem significantly less worrisome than originally thought. "
From the Post:
"Altogether, the analysis shows that about 1 in 14 — slightly more than 7 percent — of U.S. patients who had covid visited health-care practitioners within six months of their initial infections complaining of at least one symptom typical of long covid they’d not had before. That proportion is within the range identified by some smaller studies but is lower than that found by other research using broader definitions of long covid.
In a country where at least 200 million people have been infected with SARS-CoV-2, according to federal estimates, the rate detected by The Post translates into about 14 million U.S. residents who survived the virus and are struggling with long-lasting effects that often alter their lives."
I'm also very skeptical about drawing any early conclusions from disability claims or workforce participation, as is mentioned in the Slate article. There are too many cofounding economic and operational factors that can affect disability applications and decisions about returning to work.
posted by Mr.Know-it-some at 7:43 AM on March 20, 2023 [6 favorites]
And I don't read any of the analysis as minimizing the true harm that millions of people have experienced. It can be simultaneously true that long Covid is a huge problem and that it is smaller than previously feared.
From the Slate article: "I want to be clear about this: Long COVID is a real illness that has dramatically affected many people’s lives. But its prevalence does seem significantly less worrisome than originally thought. "
From the Post:
"Altogether, the analysis shows that about 1 in 14 — slightly more than 7 percent — of U.S. patients who had covid visited health-care practitioners within six months of their initial infections complaining of at least one symptom typical of long covid they’d not had before. That proportion is within the range identified by some smaller studies but is lower than that found by other research using broader definitions of long covid.
In a country where at least 200 million people have been infected with SARS-CoV-2, according to federal estimates, the rate detected by The Post translates into about 14 million U.S. residents who survived the virus and are struggling with long-lasting effects that often alter their lives."
I'm also very skeptical about drawing any early conclusions from disability claims or workforce participation, as is mentioned in the Slate article. There are too many cofounding economic and operational factors that can affect disability applications and decisions about returning to work.
posted by Mr.Know-it-some at 7:43 AM on March 20, 2023 [6 favorites]
I'm also very skeptical about drawing any early conclusions from disability claims or workforce participation, as is mentioned in the Slate article.
Me, too, given that most of these claims will require participation by an HR department, which is always in short supply -- or missing entirely from the lives of freelancers, part-timers, and other non-office types.
posted by wenestvedt at 7:46 AM on March 20, 2023 [13 favorites]
Me, too, given that most of these claims will require participation by an HR department, which is always in short supply -- or missing entirely from the lives of freelancers, part-timers, and other non-office types.
posted by wenestvedt at 7:46 AM on March 20, 2023 [13 favorites]
Yeah, I know it’s not about me, just was frustrating to see. The thing about long COVID and these reports is that how do they know what people are still suffering with if they’re not going to the doctor anymore?
I’ve done many tests in Feb 2022 and then again Feb 2023 with my GP. Plus some other places in between. Nothing checked out, I’m in absolute perfect health basically. So I’m not still asking my doctor for things because there’s really not a point. I may be on a chart as having my symptoms resolved but… nope, not really. And my work doesn’t know, I look perfectly healthy.
I am still reading the full article so if that’s covered, I apologize. I’ve seen other similar articles where it was the people stopped going to the pointless doctor because nothing can really be done.
As a point of light, it seems acupuncture may be helping me. It was kind of a Hail Mary after my mom visit. So now I’ve had two needle poking sessions and my skin doesn’t hurt and feel like it’s a weighted blanket!
posted by OnTheLastCastle at 7:59 AM on March 20, 2023 [18 favorites]
I’ve done many tests in Feb 2022 and then again Feb 2023 with my GP. Plus some other places in between. Nothing checked out, I’m in absolute perfect health basically. So I’m not still asking my doctor for things because there’s really not a point. I may be on a chart as having my symptoms resolved but… nope, not really. And my work doesn’t know, I look perfectly healthy.
I am still reading the full article so if that’s covered, I apologize. I’ve seen other similar articles where it was the people stopped going to the pointless doctor because nothing can really be done.
As a point of light, it seems acupuncture may be helping me. It was kind of a Hail Mary after my mom visit. So now I’ve had two needle poking sessions and my skin doesn’t hurt and feel like it’s a weighted blanket!
posted by OnTheLastCastle at 7:59 AM on March 20, 2023 [18 favorites]
If true, this is great news. Anecdotally, I know a few people with what I would consider pretty severe long term effects, and I'm sure I know more who have had more minor long term effects that they just don't talk about. But what is clear, at least for the people I know personally, is that there is not anywhere near the prevalence of severe effects that was predicted in some of the early research.
I really hope this isn't used to minimize anyone's personal situation, since even with a lower-than-initially-predicted prevalence, that's still a lot of people.
posted by Dip Flash at 7:59 AM on March 20, 2023 [2 favorites]
I really hope this isn't used to minimize anyone's personal situation, since even with a lower-than-initially-predicted prevalence, that's still a lot of people.
posted by Dip Flash at 7:59 AM on March 20, 2023 [2 favorites]
I'm quite skeptical of interpreting incidence rates from diagnosis within electronic health records. It's well known that the typical sequence of medical care for chronic illness (that is, if you go at all) goes along the lines of
Patient: I feel awful, my brain is foggy, I'm so tired. I can't walk, I can't work.
Doctor: Let's run some blood tests .... your bloodwork looks fine, your BP is fine, you're healthy. I can't test for brain fog. "Lifestyle modifications" are the only words I have for you.
Health record: { ____________________ }
This is reflected in the lack of an ICD code for long covid until late 2021 - there was nothing to diagnose. There are biases in every study, and these matched samples aren't immune from biases.
The interpretation that not very many claims have been awarded from NYS for long covid, means that long covid isn't a thing, has some difficulties as well.
posted by Dashy at 8:00 AM on March 20, 2023 [57 favorites]
Patient: I feel awful, my brain is foggy, I'm so tired. I can't walk, I can't work.
Doctor: Let's run some blood tests .... your bloodwork looks fine, your BP is fine, you're healthy. I can't test for brain fog. "Lifestyle modifications" are the only words I have for you.
Health record: { ____________________ }
This is reflected in the lack of an ICD code for long covid until late 2021 - there was nothing to diagnose. There are biases in every study, and these matched samples aren't immune from biases.
The interpretation that not very many claims have been awarded from NYS for long covid, means that long covid isn't a thing, has some difficulties as well.
posted by Dashy at 8:00 AM on March 20, 2023 [57 favorites]
Moving between "I want to be clear about this: Long COVID is a real illness that has dramatically affected many people’s lives" and "To be blunt, long COVID doesn’t much look like what would normally be a called a disease" is the kind of rhetorical move that absolutely gets used by people who want to hint an illness isn't real (or if it's real it's psychosomatic) with plausible deniability. That may not be what this journalist is going for, but long covid patients aren't being oversensitive to notice.
I have a diagnosis of chronic daily migraine, which started the day I came down with covid in March 2020 and hasn't let up since. The neurologist settled on this diagnosis when I was nearly two years in, which I'm fine with (at least there's an established treatment path). But he was clear it was a pragmatic best fit and there isn't really a conclusive way to distinguish my symptoms from someone with a long covid diagnosis. He has a clinic of migraineurs with COVID-triggered chronicity in the same boat; and none of us would show up as people still suffering long covid according to the studies cited by this article.
For what it's worth, I always felt the 30% prevalence estimates were at odds with my anecdotal experience. I'd have guessed 5 to 10%. My worry was never about prevalence - it was that we'd be swept under the carpet, because people would rather forget we exist.
posted by Ballad of Peckham Rye at 8:02 AM on March 20, 2023 [50 favorites]
I have a diagnosis of chronic daily migraine, which started the day I came down with covid in March 2020 and hasn't let up since. The neurologist settled on this diagnosis when I was nearly two years in, which I'm fine with (at least there's an established treatment path). But he was clear it was a pragmatic best fit and there isn't really a conclusive way to distinguish my symptoms from someone with a long covid diagnosis. He has a clinic of migraineurs with COVID-triggered chronicity in the same boat; and none of us would show up as people still suffering long covid according to the studies cited by this article.
For what it's worth, I always felt the 30% prevalence estimates were at odds with my anecdotal experience. I'd have guessed 5 to 10%. My worry was never about prevalence - it was that we'd be swept under the carpet, because people would rather forget we exist.
posted by Ballad of Peckham Rye at 8:02 AM on March 20, 2023 [50 favorites]
Disability claims to Social Security dropped 10% in 2020, 12% in 2021, and 5% in 2022. In the first two months of 2023, they are down 1% and 4%.* Some of that's because SSA offices were closed for quite a while in 2020 and 2021, but it's continued since they reopened. I wouldn't argue that Long Covid isn't an issue and that people with it aren't suffering, but the overwhelming wave that the media has been touting just isn't appearing. That is a good thing.
*https://www.ssa.gov/OACT/STATS/dibStat.html
posted by Galvanic at 8:03 AM on March 20, 2023 [3 favorites]
*https://www.ssa.gov/OACT/STATS/dibStat.html
posted by Galvanic at 8:03 AM on March 20, 2023 [3 favorites]
The fact that women are more likely to get Long COVID than men is contributing to Long COVID patients being dismissed.
Doctors are much more likely to take chronic illness in male patients seriously than they are to take those exact same symptoms in female patients seriously.
posted by chariot pulled by cassowaries at 8:06 AM on March 20, 2023 [47 favorites]
Doctors are much more likely to take chronic illness in male patients seriously than they are to take those exact same symptoms in female patients seriously.
posted by chariot pulled by cassowaries at 8:06 AM on March 20, 2023 [47 favorites]
My wife lost her sense of smell and taste when we both got infected in August '22. It only started noticeably coming back in January when we caught it again in February '23. She's back to tasting base tastes (sweet, sour, salty and bitter).
The article unstated description of severe long COVID is a body not able to work and she clearly can. However, the effect on her well-being is profound. Not only because food either doesn't taste of much or can be downright unpleasant (bitter parts that might not be noticeable before really stand out now). It really raises the question of what one can expect of life. Will she lose any recovered sense of taste every time she gets infected? Will she completely lose it at some point once cells in her nose are damaged enough?
My fear is the same as EmpressCallipygos's. That this good news will just be another reason to go back to usual, underfund further research and leave invisible sufferers to their own devices as there are too few too worry.
posted by samastur at 8:06 AM on March 20, 2023 [23 favorites]
The article unstated description of severe long COVID is a body not able to work and she clearly can. However, the effect on her well-being is profound. Not only because food either doesn't taste of much or can be downright unpleasant (bitter parts that might not be noticeable before really stand out now). It really raises the question of what one can expect of life. Will she lose any recovered sense of taste every time she gets infected? Will she completely lose it at some point once cells in her nose are damaged enough?
My fear is the same as EmpressCallipygos's. That this good news will just be another reason to go back to usual, underfund further research and leave invisible sufferers to their own devices as there are too few too worry.
posted by samastur at 8:06 AM on March 20, 2023 [23 favorites]
I got covid last July and lost my sense of taste and smell for about a month. When it came back, everything tasted wrong and for the longest time I couldn't enjoy anything bitter, like hoppy beer and dark chocolate, anymore. As of this month things are finally back to normal, I think. It is so hard to tell as it has been so long. But I can enjoy bitter food again, and I think my sense of smell is fully returned.
posted by fimbulvetr at 8:11 AM on March 20, 2023 [4 favorites]
posted by fimbulvetr at 8:11 AM on March 20, 2023 [4 favorites]
The Montefiore study states, itself: Notably, it is a retrospective investigation relying on available EHR data. While EHR data offer numerous advantages, it is possible that some neuro-PASC symptoms were not documented pre-, during, or post-COVID-19 diagnosis. We considered only patients who returned to the hospital for care after COVID-19 diagnosis and therefore an overall neuro-PASC incidence rate could not be reported.
posted by Dashy at 8:12 AM on March 20, 2023 [6 favorites]
posted by Dashy at 8:12 AM on March 20, 2023 [6 favorites]
Queensland researchers from Griffith University have identified similar changes in brain structure among people who have
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID
posted by chariot pulled by cassowaries at 8:19 AM on March 20, 2023 [3 favorites]
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID
posted by chariot pulled by cassowaries at 8:19 AM on March 20, 2023 [3 favorites]
and I'm sure I know more who have had more minor long term effects that they just don't talk about
I've touched on this in a previous thread ...
roughly eight months before Covid hit, I got nailed with a brutal flu. A solid week of thinking if it got any worse, I'd be checking into Emergency, and better part of a month before I was back to being what I'd call functional ... and many more months of weird aches and pains and recurring low energy phases before I was hundred percent. Call it long flu, I guess.
I wasn't aiming to dismiss concerns about Long Covid as I had two friends currently dealing with it at the time. But I was discussing it with them, tracking their trajectory, comparing similarities. Which was not to say Covid is just a bad flu. More to say (by way of encouragement) that the after effects of my illness did finally end.
I also learned (via discussions with my doctor) that such prolonged effects, though uncommon, are anything but unprecedented when it comes to flu; that in fact many people (particularly as they grow older) have a flu that leaves them with more or less permanent damage.
These post-flu risks may not be as well known or as well publicized as the more obvious symptoms and immediate complications of influenza itself. "It makes flu an even nastier virus than we thought," said Dr. Schaffner, "and we thought it was plenty nasty already, even without these lasting effects."
But ultimately, that's life isn't it? It leaves us with lasting effects.
posted by philip-random at 8:21 AM on March 20, 2023 [10 favorites]
I've touched on this in a previous thread ...
roughly eight months before Covid hit, I got nailed with a brutal flu. A solid week of thinking if it got any worse, I'd be checking into Emergency, and better part of a month before I was back to being what I'd call functional ... and many more months of weird aches and pains and recurring low energy phases before I was hundred percent. Call it long flu, I guess.
I wasn't aiming to dismiss concerns about Long Covid as I had two friends currently dealing with it at the time. But I was discussing it with them, tracking their trajectory, comparing similarities. Which was not to say Covid is just a bad flu. More to say (by way of encouragement) that the after effects of my illness did finally end.
I also learned (via discussions with my doctor) that such prolonged effects, though uncommon, are anything but unprecedented when it comes to flu; that in fact many people (particularly as they grow older) have a flu that leaves them with more or less permanent damage.
These post-flu risks may not be as well known or as well publicized as the more obvious symptoms and immediate complications of influenza itself. "It makes flu an even nastier virus than we thought," said Dr. Schaffner, "and we thought it was plenty nasty already, even without these lasting effects."
But ultimately, that's life isn't it? It leaves us with lasting effects.
posted by philip-random at 8:21 AM on March 20, 2023 [10 favorites]
It's pretty hard to test for blood clots until they happen, and then it's usually too fucking late. I'm keeping my mask on.
posted by seanmpuckett at 8:28 AM on March 20, 2023 [19 favorites]
posted by seanmpuckett at 8:28 AM on March 20, 2023 [19 favorites]
It's worth remembering that patients with Multiple Sclerosis were often labelled "hysterical" or "psychosomatic" until the invention of Magnetic resonance imaging (MRI) and computed tomography scan (CT scan) allowed doctors to see the brain changes with their own eyes.
Because why believe patients about their own experiences?
posted by chariot pulled by cassowaries at 8:35 AM on March 20, 2023 [35 favorites]
Because why believe patients about their own experiences?
posted by chariot pulled by cassowaries at 8:35 AM on March 20, 2023 [35 favorites]
This is maddening. As someone with CFS who was told decades ago I'd get better and to stop complaining I always suspected this is the way long covid was going to go. Any hopes I had that it would improve the outlook for people with other under-researched chronic illnesses is gone.
posted by opsin at 8:41 AM on March 20, 2023 [29 favorites]
posted by opsin at 8:41 AM on March 20, 2023 [29 favorites]
The Montefiore article explicitly says: We considered only patients who returned to the hospital for care after COVID-19 diagnosis and therefore an overall neuro-PASC incidence rate could not be reported. The same limitation applied to the Israeli study.
Yet the Slate article interpreted the results as The researchers had gone into the project expecting to find a large number of chronic COVID aftereffects. Instead, they concluded that there were actually very few. and for backup cited the Montefiore study: "The number of patients reporting new-onset neuropsychiatric symptoms after COVID-19 was 388, or 2 percent".
This is not good journalism.
posted by Dashy at 8:42 AM on March 20, 2023 [35 favorites]
Yet the Slate article interpreted the results as The researchers had gone into the project expecting to find a large number of chronic COVID aftereffects. Instead, they concluded that there were actually very few. and for backup cited the Montefiore study: "The number of patients reporting new-onset neuropsychiatric symptoms after COVID-19 was 388, or 2 percent".
This is not good journalism.
posted by Dashy at 8:42 AM on March 20, 2023 [35 favorites]
On one hand, this article seems to match the experience of my social world - most people (not me, yet, that I know of) have had covid, almost all didn't get too sick, lingering symptoms were not disabling and did not linger too long in almost all cases. Which is good! Even if our choice is between "many people get crummy symptoms that linger but don't render them broke and homeless" and "many people get substantially disabling symptoms" I will still choose the first, and find that reassuring as the world around me unmasks.
On the other, I really, really worry about covid reinfections and long-term damage. What if most people don't get long covid after two infections but most people do get significant lingering symptoms after five or six infections? Are we going to see a huge wave of young-onset dementias, cancers, heart disease, etc, that are simply caused by repeated damaging infections and don't become visible for ten years or so? It's great to think, "If I do get covid a few times in the future, I probably won't lose my job or become bedridden" but what if the corollary is "if I get covid a few times in the future, I'll die of heart disease at sixty because my body is so damaged"?
posted by Frowner at 8:44 AM on March 20, 2023 [24 favorites]
On the other, I really, really worry about covid reinfections and long-term damage. What if most people don't get long covid after two infections but most people do get significant lingering symptoms after five or six infections? Are we going to see a huge wave of young-onset dementias, cancers, heart disease, etc, that are simply caused by repeated damaging infections and don't become visible for ten years or so? It's great to think, "If I do get covid a few times in the future, I probably won't lose my job or become bedridden" but what if the corollary is "if I get covid a few times in the future, I'll die of heart disease at sixty because my body is so damaged"?
posted by Frowner at 8:44 AM on March 20, 2023 [24 favorites]
We considered only patients who returned to the hospital for care after COVID-19 diagnosis and therefore an overall neuro-PASC incidence rate could not be reported
So, they are excluding patients with long-COVID who:
a) sought care elsewhere;
b) were too physically unwell to leave their homes to seek care;
c) did not go back to the hospital to seek care for fear of catching COVID again;
d) did not go back to the hospital to seek care because they did not have the money to do so.
posted by chariot pulled by cassowaries at 8:50 AM on March 20, 2023 [50 favorites]
So, they are excluding patients with long-COVID who:
a) sought care elsewhere;
b) were too physically unwell to leave their homes to seek care;
c) did not go back to the hospital to seek care for fear of catching COVID again;
d) did not go back to the hospital to seek care because they did not have the money to do so.
posted by chariot pulled by cassowaries at 8:50 AM on March 20, 2023 [50 favorites]
Are we undercounting people who are
(a) not making claims at all because their health care professionals don't believe them?
(b) making claims that are not successful because somebody at NYSIF doesn't believe them?
(c) not making claims at all because they don't have the energy or resources it takes to understand the process, get all the documentation for the process, and complete all the steps of the process
(d) not making claims at all because they don't trust the process
When you've got a condition that leaves you short of the energy and clarity it takes just to live your normal life, putting yourself up for evaluation in a complicated bureaucratic process is even more daunting than it normally might be.
Also we already know that covid disproportionately affected older people, many of whom were out of the workforce to begin with, and people with lower socioeconomic status who often have good reason to not believe they'll get anything from going through a claims process, don't have steady work with employers that will participate in the process, don't feel as comfortable navigating the bureaucracy, don't have the resources to hire help with the process, might face language barriers, might be undocumented, and so on.
There are a lot of reasons people don't apply for assistance, and they're not evenly distributed. I guess rate of change of successful claims is a measure of something, but it's a limited measure at best.
posted by trig at 8:57 AM on March 20, 2023 [21 favorites]
(a) not making claims at all because their health care professionals don't believe them?
(b) making claims that are not successful because somebody at NYSIF doesn't believe them?
(c) not making claims at all because they don't have the energy or resources it takes to understand the process, get all the documentation for the process, and complete all the steps of the process
(d) not making claims at all because they don't trust the process
When you've got a condition that leaves you short of the energy and clarity it takes just to live your normal life, putting yourself up for evaluation in a complicated bureaucratic process is even more daunting than it normally might be.
Also we already know that covid disproportionately affected older people, many of whom were out of the workforce to begin with, and people with lower socioeconomic status who often have good reason to not believe they'll get anything from going through a claims process, don't have steady work with employers that will participate in the process, don't feel as comfortable navigating the bureaucracy, don't have the resources to hire help with the process, might face language barriers, might be undocumented, and so on.
There are a lot of reasons people don't apply for assistance, and they're not evenly distributed. I guess rate of change of successful claims is a measure of something, but it's a limited measure at best.
posted by trig at 8:57 AM on March 20, 2023 [21 favorites]
And also not making claims because they don't know that it's a thing they can pursue! There are people who think they have to go it alone, for a variety of reasons.
posted by Slackermagee at 9:02 AM on March 20, 2023 [10 favorites]
posted by Slackermagee at 9:02 AM on March 20, 2023 [10 favorites]
It's like how in unemployment numbers, they don't count people who have given up looking for work because whatever reason, like they don't have an address, they don't have nice clothes, they don't have a bank account, they don't have government ID, they aren't neurotypical, they are disabled, they have children they can't leave alone, they're caregivers for an elderly parent, they can't maintain focus for more than a couple hours at a time, etc, etc, etc, even though these people would absolutely work if they found a job that would suit their needs. The numbers are just bullshit, spun to help the status quo's own agenda.
posted by seanmpuckett at 9:20 AM on March 20, 2023 [29 favorites]
posted by seanmpuckett at 9:20 AM on March 20, 2023 [29 favorites]
This reads to me like long-covid sufferers have successfully been laughed out of doctor's offices. I'm gonna keep wearing a mask and not going to restaurants.
posted by Galaxor Nebulon at 9:50 AM on March 20, 2023 [25 favorites]
posted by Galaxor Nebulon at 9:50 AM on March 20, 2023 [25 favorites]
What would a person like me report? My doctor can’t find anything wrong with me. Like… we did all the tests. All he could say in the end is that I have the symptoms of LC, it’s not like there is even an official diagnostic to diagnose. Sorry, I don’t mean to keep inserting myself into the convo except that a lot of people must be like me and just… nothing is actionable beyond lay down, don’t stress.
I guess that is why this article frustrated me so much. That and the doctor midway who had publicized LC early later said he recovered with exercise. Exercise for people with ME/CFS can actually permanently damage them and make the condition permanent from what I’ve read. It’s incredibly frustrating because yeah, moving does make people feel better! Unless your body then punishes you with feeing like you’re made of lead.
I wish it was something like low testosterone or diabetes almost because then it’s ACTIONABLE and EXPLAINABLE. I’m not even clear on how to tell my boss about it, I’ve been hiding it for a year and probably lost a promotion because of it.
posted by OnTheLastCastle at 10:07 AM on March 20, 2023 [21 favorites]
I guess that is why this article frustrated me so much. That and the doctor midway who had publicized LC early later said he recovered with exercise. Exercise for people with ME/CFS can actually permanently damage them and make the condition permanent from what I’ve read. It’s incredibly frustrating because yeah, moving does make people feel better! Unless your body then punishes you with feeing like you’re made of lead.
I wish it was something like low testosterone or diabetes almost because then it’s ACTIONABLE and EXPLAINABLE. I’m not even clear on how to tell my boss about it, I’ve been hiding it for a year and probably lost a promotion because of it.
posted by OnTheLastCastle at 10:07 AM on March 20, 2023 [21 favorites]
ok I must admit to being a little floored by the tenor of many other responses here.
so, first of all, the article's author explicitly does not deny the existence or potential severity of long COVID, but instead points to the prevalence data as heartening:
that such a revelation might lead to less thoughtful care or research into rare chronic illnesses is a condemnation of our systems of medical care and incentives for research, not an invalidation of the data in itself. in fact the article in part emphasizes the frustrations and difficulties of patients in trying to receive proper treatment, not as a way to say they were not ill but instead to praise the work done under much less research-heavy conditions to create awareness for those who were suffering.
posted by Kybard at 10:07 AM on March 20, 2023 [37 favorites]
so, first of all, the article's author explicitly does not deny the existence or potential severity of long COVID, but instead points to the prevalence data as heartening:
I want to be clear about this: Long COVID is a real illness that has dramatically affected many people’s lives. But its prevalence does seem significantly less worrisome than originally thought.minimization of others' illness is not at all the point here; it's that the research to date suggests that the rates of long COVID are relatively lower than expected/feared, which is unambiguously a good thing!
that such a revelation might lead to less thoughtful care or research into rare chronic illnesses is a condemnation of our systems of medical care and incentives for research, not an invalidation of the data in itself. in fact the article in part emphasizes the frustrations and difficulties of patients in trying to receive proper treatment, not as a way to say they were not ill but instead to praise the work done under much less research-heavy conditions to create awareness for those who were suffering.
The numbers are just bullshit, spun to help the status quo's own agenda.this feels wild to me. under this degree of pressure from contraindicatory anecdotes or hypotheticals, what kind of numbers would not end up seeming like bullshit?
I'm gonna keep wearing a mask and not going to restaurants.so am I! but why must we position this article as full-bore COVID denial piece, instead of a hopeful note amid the ongoing horrors and exhaustions of the pandemic?
posted by Kybard at 10:07 AM on March 20, 2023 [37 favorites]
Because it's going to be used to justify bullshit that will disable and kill more people. I can be happy for the report and also know that it's going to fuck people over. Things are complex, yo.
posted by seanmpuckett at 10:19 AM on March 20, 2023 [33 favorites]
posted by seanmpuckett at 10:19 AM on March 20, 2023 [33 favorites]
I am skeptical of this piece because it quotes this "So far there are no diagnostic findings that would allow you to even say for sure that post-Covid even exists, biochemically" BUT doesn't quote any of the research on actual biochemical markers of Long Covid, e.g. this 2022 paper on immune profiles from Akiko Iwasaki's lab and others.
posted by spamandkimchi at 10:29 AM on March 20, 2023 [9 favorites]
posted by spamandkimchi at 10:29 AM on March 20, 2023 [9 favorites]
it's that the research to date suggests that the rates of long COVID are relatively lower than expected/feared
That is not what the articles linked and cited conclude. Full stop.
My negative tenor comes from a pop-news article that says "scientists say long covid isn't prevalent at all! Less than 2%!" because that lie will absolutely be repeated optimistically and for manipulative reasons.
Most scientists, when confronted with a number that is far out of range from dozens of others that came before it, think twice. You should too. Certainly don't write a Slate article about "long covid is a lie!"
posted by Dashy at 10:35 AM on March 20, 2023 [8 favorites]
That is not what the articles linked and cited conclude. Full stop.
My negative tenor comes from a pop-news article that says "scientists say long covid isn't prevalent at all! Less than 2%!" because that lie will absolutely be repeated optimistically and for manipulative reasons.
Most scientists, when confronted with a number that is far out of range from dozens of others that came before it, think twice. You should too. Certainly don't write a Slate article about "long covid is a lie!"
posted by Dashy at 10:35 AM on March 20, 2023 [8 favorites]
Count me in as another likely long COVIDer for whom this would not be discernable in medical records.
posted by lookoutbelow at 10:45 AM on March 20, 2023 [4 favorites]
posted by lookoutbelow at 10:45 AM on March 20, 2023 [4 favorites]
To me, this article's frame of "look at how much under-informed panic there was early on!" lends itself all too handily to dismissal of long covid, whether this is intended by the author or not. Even the early quotes from long covid sufferers such as "Long COVID has a strong claim to be the first illness created through patients finding one another on Twitter" can undercut actual long covid sufferers. There are so many other ways to say that research on long covid emerged through patient advocacy, the author of the article didn't need to choose a quote with the words "created" and "Twitter."
posted by spamandkimchi at 10:53 AM on March 20, 2023 [9 favorites]
posted by spamandkimchi at 10:53 AM on March 20, 2023 [9 favorites]
Also for a message of hope that I actually felt hopeful after reading, here's a March 15th thread from @PutrinoLab (reformatted for better readability):
As I reflect today on #InternationalLongCovidAwarenessDay I know that there is a lot of suffering, loss and grief to account for, but I wanted to offer a message of hope. Today, we:posted by spamandkimchi at 11:01 AM on March 20, 2023 [14 favorites]
1) Categorically know more about #LongCovid than we did last year
2) Have educated thousands of clinicians on basic care and management strategies
3) Have some good-quality drug trials in the mix (thanks @hmkyale and @VirusesImmunity among many others)
4) Have #MECFS and #vaccineinjury cohorts being added to clinical trials (finally!)
5) Microclot research is being taken seriously by all serious scientists (and major journals: thanks @doctorasadkhan, @dbkell, @resiapretorius and all #teamclots fam)
6) viral persistence research is being taken seriously by all serious scientists (thanks @microbeminded2, @MBVanElzakker and many others)
7) more than ever before, community co-design and patient-led initiatives are steering #LongCovid research (thanks @patientled, @LongCOVIDPhysio, @LongCovidSOS, @itsbodypolitic, @MEActNet @ahandvanish, @LisaAMcCorkell @loscharlos and many more (apologies I couldn’t fit more))
This thread is by no means a “victory lap”: we have so much more to do and you have waited so long already. But, today I just want to say to the #LongCovid community: We are here. We are learning. We are not going to stop. We are with you in this fight, and you are not forgotten.
I am skeptical of this piece because it quotes this "So far there are no diagnostic findings that would allow you to even say for sure that post-Covid even exists, biochemically"
Agreed, I was surprised to read this. I feel like I've been seeing regular reports about various biochemical markers, including cytokines (confirming inflammation and neuro/cognitive effects), covid-related t-cells (suggesting possibility of active reservoirs of the virus), etc.
My long covid health care provider points out that they don't have a single theory of practice about it, because it manifests in different ways and might be several different things: small fiber neuropathy, autoimmune disorder, deep lingering active virus, or lingering damage to complex systems.
And indeed, the diagnostic criteria (per CDC) is [a bunch of symptoms] that started with covid infection and are not explained by all the other tests that the health care provider is about to run. It is slippery!
posted by entropone at 11:15 AM on March 20, 2023 [5 favorites]
Agreed, I was surprised to read this. I feel like I've been seeing regular reports about various biochemical markers, including cytokines (confirming inflammation and neuro/cognitive effects), covid-related t-cells (suggesting possibility of active reservoirs of the virus), etc.
My long covid health care provider points out that they don't have a single theory of practice about it, because it manifests in different ways and might be several different things: small fiber neuropathy, autoimmune disorder, deep lingering active virus, or lingering damage to complex systems.
And indeed, the diagnostic criteria (per CDC) is [a bunch of symptoms] that started with covid infection and are not explained by all the other tests that the health care provider is about to run. It is slippery!
posted by entropone at 11:15 AM on March 20, 2023 [5 favorites]
Certainly don't write a Slate article about "long covid is a lie!"
Sorry, where in this article does it state or imply that “long Covid is a lie”?
posted by holborne at 11:31 AM on March 20, 2023 [11 favorites]
Sorry, where in this article does it state or imply that “long Covid is a lie”?
posted by holborne at 11:31 AM on March 20, 2023 [11 favorites]
Amazing what you don't find when you try to not look for it!
Goes hand in hand with all the widely reported "Covid #s are down" when you stop testing for it.
People see what they want to see.
posted by cfraenkel at 11:59 AM on March 20, 2023 [4 favorites]
Goes hand in hand with all the widely reported "Covid #s are down" when you stop testing for it.
People see what they want to see.
posted by cfraenkel at 11:59 AM on March 20, 2023 [4 favorites]
I would so love to feel reassured by this. And my personal prophylaxis is not exactly on the extreme end of covid precaution-- I am basically living my life, along with masking when I'm indoors with strangers. But this piece engaged with the most alarmist available claims about long Covid and societal collapse while failing to really address the kinds of worries that an average person might have about their own health. And the tenor and structure of the piece are basically indistinguishable from the ceaseless Trump-Biden policy astroturfing we see in nearly every op-ed page nearly every day.
posted by dusty potato at 12:28 PM on March 20, 2023 [1 favorite]
posted by dusty potato at 12:28 PM on March 20, 2023 [1 favorite]
(In particular it fails to engage with the huge question mark around multiple infections; the fact that we're only in year three of a virus that our political leaders have decided we'll just go ahead and contract over and over, forever.)
posted by dusty potato at 12:31 PM on March 20, 2023 [5 favorites]
posted by dusty potato at 12:31 PM on March 20, 2023 [5 favorites]
Sorry, where in this article does it state or imply that “long Covid is a lie”?
Here:
posted by being_quiet at 12:52 PM on March 20, 2023 [18 favorites]
Here:
In the absence of any test for the disease, there is no way to definitively say that their symptoms are actually directly caused by the SARS-CoV-2 virus.And:
To be blunt, long COVID doesn’t much look like what would normally be a called a disease.And:
As Science columnist Derek Lowe wrote last year, “So far there are no diagnostic findings that would allow you to even say for sure that post-Covid even exists, biochemically.” (Critically, this means that no test can definitively diagnose long COVID as a unique condition. Studies have shown that symptoms following a COVID infection are associated with real changes in the body.)The sentence in parenthesis here was added sometime after publication, presumably after a late fact check. There are more implications in the article but I won't go on.
posted by being_quiet at 12:52 PM on March 20, 2023 [18 favorites]
In the absence of any test for the disease, there is no way to definitively say that their symptoms are actually directly caused by the SARS-CoV-2 virus.
This is true, though, scientifically, is it not? Particularly if the symptoms are either relatively common or relatively nonspecific.
To be blunt, long COVID doesn’t much look like what would normally be a called a disease.
If you end up with a cluster of different conditions affecting different systems in different ways that have to be treated in different ways, which it seems may be the case, then it may not make sense to treat them as "a disease." We don't treat shingles and chickenpox as "a disease" called Varicella Zoster Syndrome.
posted by praemunire at 1:13 PM on March 20, 2023 [10 favorites]
This is true, though, scientifically, is it not? Particularly if the symptoms are either relatively common or relatively nonspecific.
To be blunt, long COVID doesn’t much look like what would normally be a called a disease.
If you end up with a cluster of different conditions affecting different systems in different ways that have to be treated in different ways, which it seems may be the case, then it may not make sense to treat them as "a disease." We don't treat shingles and chickenpox as "a disease" called Varicella Zoster Syndrome.
posted by praemunire at 1:13 PM on March 20, 2023 [10 favorites]
These post-flu risks may not be as well known or as well publicized as the more obvious symptoms and immediate complications of influenza itself. "It makes flu an even nastier virus than we thought," said Dr. Schaffner, "and we thought it was plenty nasty already, even without these lasting effects."
This is why I absolutely believe long covid exists and it's because of my own experience involving a pretty significant effect on my cognitive abilities following a particularly nasty flu. My life changed pretty dramatically as a result. Funny thing tho: in the ensuing chaos, it took me almost 10 years to realize the connection. It also just never occurred to me before that this was even a thing that was possible? Such profound and possibly permanent changes as a result of a viral infection? Sounds bananas, and yet here we are.
posted by some loser at 1:36 PM on March 20, 2023 [9 favorites]
This is why I absolutely believe long covid exists and it's because of my own experience involving a pretty significant effect on my cognitive abilities following a particularly nasty flu. My life changed pretty dramatically as a result. Funny thing tho: in the ensuing chaos, it took me almost 10 years to realize the connection. It also just never occurred to me before that this was even a thing that was possible? Such profound and possibly permanent changes as a result of a viral infection? Sounds bananas, and yet here we are.
posted by some loser at 1:36 PM on March 20, 2023 [9 favorites]
It's just so hard to read this knowing that the US and other countries have been making it nearly impossible to track a goddamn thing so it's easy to release reports like this and the headlines will soothe most people so they keep going to work and spending money and talking each other out of precautions.
A two-year study on something that's only existed for 3 years is at best a study on the first year's variants - for which there was no test for half the year, and during which there was significant curtailing of public activities so significantly more people were able to convalesce. There's never going to be real numbers, we were already ensuring that by the autumn of 2020 and were actively obfuscating by mid-summer 2021, so that there will always be plausible deniability and there will never be a reconciliation.
posted by Lyn Never at 1:50 PM on March 20, 2023 [11 favorites]
A two-year study on something that's only existed for 3 years is at best a study on the first year's variants - for which there was no test for half the year, and during which there was significant curtailing of public activities so significantly more people were able to convalesce. There's never going to be real numbers, we were already ensuring that by the autumn of 2020 and were actively obfuscating by mid-summer 2021, so that there will always be plausible deniability and there will never be a reconciliation.
posted by Lyn Never at 1:50 PM on March 20, 2023 [11 favorites]
The problem is bringing up the lack of a definitive test in the context of long covid not being as alarming as first thought.
These things are only relevant to each other if one infers the lack of a definitive test casts doubt on long covid existing at all. Otherwise, why is it brought up?
The same is true of the disease definition point. They're not inaccurate points, but I am suspicious of how they can be relevant to the broader "things are more positive than you've been led to think" theme UNLESS they're meant to undermine credibility.
And it would be a selective undermining, because plenty of unpleasant illnesses you don't want have non-specific symptoms and no definitive test.
posted by Ballad of Peckham Rye at 1:53 PM on March 20, 2023 [4 favorites]
These things are only relevant to each other if one infers the lack of a definitive test casts doubt on long covid existing at all. Otherwise, why is it brought up?
The same is true of the disease definition point. They're not inaccurate points, but I am suspicious of how they can be relevant to the broader "things are more positive than you've been led to think" theme UNLESS they're meant to undermine credibility.
And it would be a selective undermining, because plenty of unpleasant illnesses you don't want have non-specific symptoms and no definitive test.
posted by Ballad of Peckham Rye at 1:53 PM on March 20, 2023 [4 favorites]
Not one single one of those things can be read, even with the most deeply uncharitable eye, as saying “Long Covid is a lie.” That is just a preposterously tendentious reading stretching the statements you cited past any reasonable bounds whatsoever.
posted by holborne at 2:09 PM on March 20, 2023 [20 favorites]
posted by holborne at 2:09 PM on March 20, 2023 [20 favorites]
"Unlike all those conservatives, we believe in science"
"Long COVID has lower prevalence than we initially thought"
"Not that science"
posted by dorothy hawk at 2:16 PM on March 20, 2023 [24 favorites]
"Long COVID has lower prevalence than we initially thought"
"Not that science"
posted by dorothy hawk at 2:16 PM on March 20, 2023 [24 favorites]
A two-year study on something that's only existed for 3 years is at best a study on the first year's variants - for which there was no test for half the year
I’m impressed that you're arguing that it’s much too soon to know anything about long Covid while simultaneously assuming that it must be widespread.
Trying to figure out the prevalence of Long Covid is not an invalidation of people with it, nor a statement of politics. It’s trying to figure out the prevalence of long Covid. If it’s less than we initially thought, that’s a good thing, not a statement about anyone’s personal experience.
posted by Galvanic at 2:37 PM on March 20, 2023 [9 favorites]
I’m impressed that you're arguing that it’s much too soon to know anything about long Covid while simultaneously assuming that it must be widespread.
Trying to figure out the prevalence of Long Covid is not an invalidation of people with it, nor a statement of politics. It’s trying to figure out the prevalence of long Covid. If it’s less than we initially thought, that’s a good thing, not a statement about anyone’s personal experience.
posted by Galvanic at 2:37 PM on March 20, 2023 [9 favorites]
"Unlike all those conservatives, we believe in science"
"Long COVID has lower prevalence than we initially thought"
"Not that science"
The authors explicitly contradict this. For the third time in this comments thread:
posted by brook horse at 2:58 PM on March 20, 2023 [22 favorites]
"Long COVID has lower prevalence than we initially thought"
"Not that science"
The authors explicitly contradict this. For the third time in this comments thread:
"We considered only patients who returned to the hospital for care after COVID-19 diagnosis and therefore an overall neuro-PASC incidence rate could not be reported."This is not a prevalence study! It is about the risk factors that make one more or less likely to develop long COVID. They made lots of decisions they would not make if this were a prevalence study. Nothing in their article represents any estimate of prevalence in the general population, their study design has nothing to do with population prevalence, population prevalence was not one of the questions they were trying to answer, idk how much more clearly this can be said.
posted by brook horse at 2:58 PM on March 20, 2023 [22 favorites]
They very easily can be read to imply that Long Covid isn't real. "It's not a disease per se", "You can't prove that Covid caused these symptoms," "It doesn't exist biochemically." It is the same way that toxic "just asking questions" rhetoric is, indeed, just asking questions, but it furthers a hidden agenda.
What's more, the assertions presented as facts, are not! Researchers and clinicians have in fact found biomarkers that can be tested for in Long Covid patients: here. Saying that it "doesn't look like a disease" has no real meaning! You could find a way to say that about many illnesses(AIDS?) if you really wanted to.
It does seem to appear that the prevalence and/or duration of of Long Covid for some patients isn't as bad as some early predictions, and that is great news if true! But there is a huge amount of research being done, and when you cherry pick data leaning one way, it makes people fairly suspicious that there is an agenda being served. Especially so when some of the worst elements of society have been trying to minimize the pandemic since the very start.
posted by being_quiet at 3:00 PM on March 20, 2023 [5 favorites]
What's more, the assertions presented as facts, are not! Researchers and clinicians have in fact found biomarkers that can be tested for in Long Covid patients: here. Saying that it "doesn't look like a disease" has no real meaning! You could find a way to say that about many illnesses(AIDS?) if you really wanted to.
It does seem to appear that the prevalence and/or duration of of Long Covid for some patients isn't as bad as some early predictions, and that is great news if true! But there is a huge amount of research being done, and when you cherry pick data leaning one way, it makes people fairly suspicious that there is an agenda being served. Especially so when some of the worst elements of society have been trying to minimize the pandemic since the very start.
posted by being_quiet at 3:00 PM on March 20, 2023 [5 favorites]
Relying on routine lab tests that show long COVID patients are perfectly healthy when they obviously are not is no longer acceptable, not just for the patients, but for researchers seeking solutions. “These individuals are really, really sick,” says Pretorius. “So just because Western medicine hasn't found the biomarker that the regular pathology laboratory can easily test doesn’t mean it doesn't exist.”
From the above link supporting the statement "clinicians have in fact found biomarkers that can be tested for" presented without further comment
posted by Jarcat at 3:07 PM on March 20, 2023 [3 favorites]
From the above link supporting the statement "clinicians have in fact found biomarkers that can be tested for" presented without further comment
posted by Jarcat at 3:07 PM on March 20, 2023 [3 favorites]
Here is a meta-analysis that was focusing on determining prevalence, btw. Its conclusions are based on 41 different studies.
The empirical findings suggest a global post-COVID-19 condition prevalence of approximately 0.43 (or 43%). Based on a WHO estimate of 470 million worldwide COVID-19 infections, this global pooled post-COVID-19 condition estimate indicates that approximately 200 million individuals currently experience or have previously experienced long-term, health-related consequences of COVID-19. Individuals who were hospitalized during acute COVID-19 infection had higher post-COVID-19 condition prevalence at 0.54, compared with nonhospitalized patients at 0.34.posted by brook horse at 3:08 PM on March 20, 2023 [1 favorite]
To those untouched by the plague. I have all my "POSITIVE" plague certificates. And I will wave them in your frowny little faces. I spent five days hospitalized in February, when I shuffled into emergency, not quite able to breathe, and then the hospital said "yup, you have it...".
I felt excellent after a redesivir drip and bounced home. Then the symptoms started creeping back, dashing to the loo (in a one horse open NAY, SORRY), stentorian breathing, and falling over when I stood up too suddenly. I spend 2 hours every morning doing, um, lung clearing. (Hawking incredible amounts (god, I am so sorry) of snot into the sink, basically, with a sprayer of disinfectant in one hand and kitchen rolls in the other & a sob when I see myself in the bathroom mirror) after a miserable night of "wet" coughing. I am up to three boxes of Kleenex a day.
So I went to my primary care MD this morning (he's been my PC for 20 years, never really liked him, actually) - with a list of symptoms, likely dates of exposure, and so forth.
He was useless. He asked how I knew I had COVID-19. I said "a hospital test, when I was hospitalized, for five days?." He said "Oh. When were you in hospital?" (info already sent. I get it, we are all fussed with other stuff. He's busy.)
I said "I am really struggling with these symptoms...?".
He said: "I can't offer you anything, you will have to get used to this". Then he checked my chart & said it was high time I saw a cardiologist anyway. So I will see a cardiologist tomorrow. And wet cough all the way to their "US medical care" banks of gold coins.
This is absolutely ridiculous.
posted by Jody Tresidder at 3:12 PM on March 20, 2023 [12 favorites]
I felt excellent after a redesivir drip and bounced home. Then the symptoms started creeping back, dashing to the loo (in a one horse open NAY, SORRY), stentorian breathing, and falling over when I stood up too suddenly. I spend 2 hours every morning doing, um, lung clearing. (Hawking incredible amounts (god, I am so sorry) of snot into the sink, basically, with a sprayer of disinfectant in one hand and kitchen rolls in the other & a sob when I see myself in the bathroom mirror) after a miserable night of "wet" coughing. I am up to three boxes of Kleenex a day.
So I went to my primary care MD this morning (he's been my PC for 20 years, never really liked him, actually) - with a list of symptoms, likely dates of exposure, and so forth.
He was useless. He asked how I knew I had COVID-19. I said "a hospital test, when I was hospitalized, for five days?." He said "Oh. When were you in hospital?" (info already sent. I get it, we are all fussed with other stuff. He's busy.)
I said "I am really struggling with these symptoms...?".
He said: "I can't offer you anything, you will have to get used to this". Then he checked my chart & said it was high time I saw a cardiologist anyway. So I will see a cardiologist tomorrow. And wet cough all the way to their "US medical care" banks of gold coins.
This is absolutely ridiculous.
posted by Jody Tresidder at 3:12 PM on March 20, 2023 [12 favorites]
"regular pathology laboratory" is the operational part of that sentence. The test described in the article to identify microclots is not available from a "regular pathology laboratory."
posted by being_quiet at 3:14 PM on March 20, 2023 [2 favorites]
posted by being_quiet at 3:14 PM on March 20, 2023 [2 favorites]
Regular pathology laboratory, aka what actual practicing clinicians have access to.
posted by Jarcat at 3:18 PM on March 20, 2023
posted by Jarcat at 3:18 PM on March 20, 2023
This study is being abused in exactly the same way as the “masks don’t work” bullshit. The people I know with long covid - quite severe that has kept them from working - wouldn’t have appeared in this methodology. Really, this is a study that shows when doctors gaslight you about how you must be well, eventually you’ll give up on trying to get help. Electronic Health Record data is a joke, especially when medical care is so inaccessible. One outlyer study doesn’t change my understanding of how prevalent long covid is. Outliers happen all the time. That’s why we ask for science to be replicable. So yeah, I believe science but not like that. Because science is a process not a single study.
posted by Bottlecap at 3:31 PM on March 20, 2023 [11 favorites]
posted by Bottlecap at 3:31 PM on March 20, 2023 [11 favorites]
Debating the reality of long Covid it is kind of a complex issue. I work in a clinic where our population is probably in excess of 40,000 lives that we serve. We have a high complement of unvaccinated true believers, we've seen lots of Covid morbidity and mortality, but pretty much every doctor has not seen anything that resembles "long Covid" as reported in the major news outlets other than a number of cases that take three or four months sometimes to seem to resolve. Usually some residual issues like increased heart rate, mild brain fog etc. But full recovery is the rule. My own fully vaccinated course took several months and I continue to have cardiac and cognitive issues that are enough to make me avoidant of reinfection but nonetheless nothing I can see a reason to fixate on, because quite simply there is jack shit anyone can do.
My personal take as a physician is that it can be quite dangerous to medicalize problems that don't have any intervention outside of encouragement, and maintenance of healthy life aspects i.e. diet exercise rest and stress management. Because the fact is that so much of illness is psychological in terms of how we deal with it. The body will inevitably try to return to its prior state of health whatever that may be. If it's helpful to have a name for symptoms then I think we have to offer that but we also have to be careful to realize that there is a lot of money to be made from keeping patients caged as victims of something that they have no control over. There's a lot of health practitioners out there making their living this way, and we've seen this before especially with "chronic Lyme disease " 20 or 30 years ago.
posted by docpops at 3:59 PM on March 20, 2023 [26 favorites]
My personal take as a physician is that it can be quite dangerous to medicalize problems that don't have any intervention outside of encouragement, and maintenance of healthy life aspects i.e. diet exercise rest and stress management. Because the fact is that so much of illness is psychological in terms of how we deal with it. The body will inevitably try to return to its prior state of health whatever that may be. If it's helpful to have a name for symptoms then I think we have to offer that but we also have to be careful to realize that there is a lot of money to be made from keeping patients caged as victims of something that they have no control over. There's a lot of health practitioners out there making their living this way, and we've seen this before especially with "chronic Lyme disease " 20 or 30 years ago.
posted by docpops at 3:59 PM on March 20, 2023 [26 favorites]
The author of the Slate article also wrote this New York Magazine piece where he asserts that "the biological theory of long COVID, like that for ME/CFS, still lacks compelling evidence" and that long COVID is probably a psychiatric condition but
posted by Jeanne at 4:03 PM on March 20, 2023 [10 favorites]
Constrained by the limits of acceptable discourse, science is effectively limited to looking for its keys only under the light of the lamppost. The NIH’s $1.15 billion long-COVID research project is specifically aimed at identifying “the underlying biological cause,” having apparently decided that there is one to begin with.He could be right about the prevalence of long COVID, he could be wrong, but I think he's cherry-picking his facts to suit a particular agenda.
posted by Jeanne at 4:03 PM on March 20, 2023 [10 favorites]
Oh man reading what that guy has to say about the debunked conditioning theory and his misconstruing of the PACE trial and its criticisms... this guy has SUCH an agenda. Also, nearly all of his other articles are about airplanes. These are the only two articles I can find by him about health anything. What chronically ill person pissed him off and made him do this fake "deep dive" into this topic?
posted by brook horse at 4:26 PM on March 20, 2023 [8 favorites]
posted by brook horse at 4:26 PM on March 20, 2023 [8 favorites]
My personal take as a physician is that it can be quite dangerous to medicalize problems that don't have any intervention outside of encouragement,
Okay, but if this is life now, a lot of people may decide nope, I’m good, refund please.
Long COVID and Suicidal thoughts from Time in June 2022.
posted by OnTheLastCastle at 5:04 PM on March 20, 2023 [4 favorites]
Okay, but if this is life now, a lot of people may decide nope, I’m good, refund please.
Long COVID and Suicidal thoughts from Time in June 2022.
posted by OnTheLastCastle at 5:04 PM on March 20, 2023 [4 favorites]
Debating the reality of long Covid it is kind of a complex issue.
Good thing this article/study do not in any way debate the reality of Long Covid.
posted by We put our faith in Blast Hardcheese at 5:04 PM on March 20, 2023 [4 favorites]
Good thing this article/study do not in any way debate the reality of Long Covid.
posted by We put our faith in Blast Hardcheese at 5:04 PM on March 20, 2023 [4 favorites]
The article very reasonably points out that a lot of reports of long Covid are hyperbolic and just simply do not hold up to what evidence can support. In medical practice we see two responses to this kind of axiom: relief and hope, or alternately dread, frustration and anger at the medical establishment.
Personally when I have faced intractable health issues I choose relief and hope in the face of uncertainty. I've never seen dread frustration and anger get people anywhere.
"Long Covid " i.e. years of debilitating symptoms, is simply not manifesting as predicted. It doesn't mean it's not real, it just means that we can offer people hope that even after two or three months they are likely to recover if they can just focus on day-to-day basic good health habits.
posted by docpops at 5:09 PM on March 20, 2023 [10 favorites]
Personally when I have faced intractable health issues I choose relief and hope in the face of uncertainty. I've never seen dread frustration and anger get people anywhere.
"Long Covid " i.e. years of debilitating symptoms, is simply not manifesting as predicted. It doesn't mean it's not real, it just means that we can offer people hope that even after two or three months they are likely to recover if they can just focus on day-to-day basic good health habits.
posted by docpops at 5:09 PM on March 20, 2023 [10 favorites]
they are likely to recover if they can just focus on day-to-day basic good health habits
Good thing we have all that paid recovery leave and affordable healthcare to support that instead of womp womp, you focused on the wrong things so it's your fault you feel bad.
posted by Lyn Never at 5:59 PM on March 20, 2023 [8 favorites]
Good thing we have all that paid recovery leave and affordable healthcare to support that instead of womp womp, you focused on the wrong things so it's your fault you feel bad.
posted by Lyn Never at 5:59 PM on March 20, 2023 [8 favorites]
"Long Covid " i.e. years of debilitating symptoms, is simply not manifesting as predicted.
Because there is no diagnostic test, nothing to do and hence no long paper trail. You’ve managed to be both patronizing as to severity and still double back to blaming people for not managing their health like they could avoid or recover from this.
This is the kind of doctor response we’re all scared of. It’s like a bad Hollywood script.
Just focus on basic good health habits, everyone! If you’re not getting better, what part of it are you fucking up? It’s not that bad anyway since we don’t have an overwhelming number of disability claims (that would be rejected) and positive LC tests (which don’t exist).
posted by OnTheLastCastle at 6:08 PM on March 20, 2023 [20 favorites]
Because there is no diagnostic test, nothing to do and hence no long paper trail. You’ve managed to be both patronizing as to severity and still double back to blaming people for not managing their health like they could avoid or recover from this.
This is the kind of doctor response we’re all scared of. It’s like a bad Hollywood script.
Just focus on basic good health habits, everyone! If you’re not getting better, what part of it are you fucking up? It’s not that bad anyway since we don’t have an overwhelming number of disability claims (that would be rejected) and positive LC tests (which don’t exist).
posted by OnTheLastCastle at 6:08 PM on March 20, 2023 [20 favorites]
Good thing we have all that paid recovery leave and affordable healthcare to support that instead of womp womp, you focused on the wrong things so it's your fault you feel bad.
posted by Lyn Never at 5:59 PM on March 20 [2 favorites +] [!]
Medical practitioners don't set federal leave policy. And to your point I issue quite a few FMLA and disability claims every year for patients for a multitude of reasons, many of which are almost completely subjective, so your point escapes me. I am simply saying that while chronic silent illnesses like depression, pain, migraines etc are level or increasing, no one in primary care is seeing 'long covid' the way it continues to be described in the media.
posted by docpops at 6:45 PM on March 20, 2023 [9 favorites]
posted by Lyn Never at 5:59 PM on March 20 [2 favorites +] [!]
Medical practitioners don't set federal leave policy. And to your point I issue quite a few FMLA and disability claims every year for patients for a multitude of reasons, many of which are almost completely subjective, so your point escapes me. I am simply saying that while chronic silent illnesses like depression, pain, migraines etc are level or increasing, no one in primary care is seeing 'long covid' the way it continues to be described in the media.
posted by docpops at 6:45 PM on March 20, 2023 [9 favorites]
"Long Covid " i.e. years of debilitating symptoms, is simply not manifesting as predicted.
Because there is no diagnostic test, nothing to do and hence no long paper trail. You’ve managed to be both patronizing as to severity and still double back to blaming people for not managing their health like they could avoid or recover from this.
This is the kind of doctor response we’re all scared of. It’s like a bad Hollywood script.
Just focus on basic good health habits, everyone! If you’re not getting better, what part of it are you fucking up? It’s not that bad anyway since we don’t have an overwhelming number of disability claims (that would be rejected) and positive LC tests (which don’t exist).
posted by OnTheLastCastle at 6:08 PM on March 20 [+] [!]
There is no diagnostic test for 95% of chronic back pain, or depression, or migraines, or trigeminal neuralgia. No one has ever debated their reality. I can do this all damn day. If you have longstanding debilitating symptoms after covid, then by logic you probably have long covid, if a thorough workup fails to reveal something else (autoimmune, vitamin deficiency, sleep apnea, etc). Nobody in medical practice is taking away your platform or right to have 'long covid'. But if I was not a medically educated person, and in month two of my brain fog and fatigue went down a rabbit hole of long covid blogs I would probably crawl in a hole and die instead of hanging in. When people are bewildered and scared in the midst of illness words matter a fuckton.
posted by docpops at 6:52 PM on March 20, 2023 [13 favorites]
Because there is no diagnostic test, nothing to do and hence no long paper trail. You’ve managed to be both patronizing as to severity and still double back to blaming people for not managing their health like they could avoid or recover from this.
This is the kind of doctor response we’re all scared of. It’s like a bad Hollywood script.
Just focus on basic good health habits, everyone! If you’re not getting better, what part of it are you fucking up? It’s not that bad anyway since we don’t have an overwhelming number of disability claims (that would be rejected) and positive LC tests (which don’t exist).
posted by OnTheLastCastle at 6:08 PM on March 20 [+] [!]
There is no diagnostic test for 95% of chronic back pain, or depression, or migraines, or trigeminal neuralgia. No one has ever debated their reality. I can do this all damn day. If you have longstanding debilitating symptoms after covid, then by logic you probably have long covid, if a thorough workup fails to reveal something else (autoimmune, vitamin deficiency, sleep apnea, etc). Nobody in medical practice is taking away your platform or right to have 'long covid'. But if I was not a medically educated person, and in month two of my brain fog and fatigue went down a rabbit hole of long covid blogs I would probably crawl in a hole and die instead of hanging in. When people are bewildered and scared in the midst of illness words matter a fuckton.
posted by docpops at 6:52 PM on March 20, 2023 [13 favorites]
I wonder how many of the Boomers who took the first wave of the pandemic as their signal to retire did so because they suddenly just didn't have the stamina to work any more. There are a heck of a lot of them who planned to work until they dropped and were planning to do so because they didn't have the savings and investments they needed to finance retirement. Anyone officially retired almost certainly won't be included in the stats of people who caught COVID and became disabled. Their age will eliminate them.
posted by Jane the Brown at 7:23 PM on March 20, 2023 [2 favorites]
posted by Jane the Brown at 7:23 PM on March 20, 2023 [2 favorites]
The body will inevitably try to return to its prior state of health whatever that may be.
With all due respect, I think you're a couple millennia behind on the state of the art in medicine here.
posted by ssg at 7:24 PM on March 20, 2023 [12 favorites]
With all due respect, I think you're a couple millennia behind on the state of the art in medicine here.
posted by ssg at 7:24 PM on March 20, 2023 [12 favorites]
/The body will inevitably try to return to its prior state of health whatever that may be.
With all due respect, I think you're a couple millennia behind on the state of the art in medicine here.
posted by ssg at 7:24 PM on March 20
I’m basing that on countless examples of patients with defined and cryptic illnesses and trauma seen and treated over a 30+ year career. It’s maybe one of the most reliable, hopeful and mystifying constructs in medicine.
posted by docpops at 7:38 PM on March 20, 2023 [11 favorites]
With all due respect, I think you're a couple millennia behind on the state of the art in medicine here.
posted by ssg at 7:24 PM on March 20
I’m basing that on countless examples of patients with defined and cryptic illnesses and trauma seen and treated over a 30+ year career. It’s maybe one of the most reliable, hopeful and mystifying constructs in medicine.
posted by docpops at 7:38 PM on March 20, 2023 [11 favorites]
I’m basing that on countless examples of patients with defined and cryptic illnesses and trauma seen and treated over a 30+ year career. It’s maybe one of the most reliable, hopeful and mystifying constructs in medicine.
Right, obviously, sometimes that happens and sometimes it doesn't. Sometimes LC is in that category and sometimes it isn't. There's obviously a lot of debate about how much LC there is out there (which is incredibly difficult to measure in any kind of reliable way) and how much of it will just improve on its own. But there's no doubt that there are people who are in poor health and have been for a few years now and don't seem to be getting better. We can debate how many there are, but I don't think it helps to deny the reality of their illness, whatever its cause may ultimately be.
posted by ssg at 7:51 PM on March 20, 2023 [2 favorites]
Right, obviously, sometimes that happens and sometimes it doesn't. Sometimes LC is in that category and sometimes it isn't. There's obviously a lot of debate about how much LC there is out there (which is incredibly difficult to measure in any kind of reliable way) and how much of it will just improve on its own. But there's no doubt that there are people who are in poor health and have been for a few years now and don't seem to be getting better. We can debate how many there are, but I don't think it helps to deny the reality of their illness, whatever its cause may ultimately be.
posted by ssg at 7:51 PM on March 20, 2023 [2 favorites]
I'm not sure why you're continuing to insist "no one" in medicine is seeing this happen ever, when we have a 41 study meta-analysis stating that a third or more of COVID-19 cases have documented symptoms of long COVID. The evidence is right there. This article misinterpreting one study doesn't refute that, nor does your personal experience which may be influenced by a multitude of factors.
posted by brook horse at 8:09 PM on March 20, 2023 [10 favorites]
posted by brook horse at 8:09 PM on March 20, 2023 [10 favorites]
No one is debating that people (including people in this very thread) have long covid. What is being debated is whether or not it is as prevalent (and as typically severe and long-lasting) as has been sometimes predicted. It seems self-evident to me that if it was as prevalent and severe as the more dire predictions, it would be much more visible all around, with catastrophic impacts. That's just not the case.
But that's not any solace to someone whose life has been impacted, and I really hope that medicine takes this more seriously and finds better interventions.
posted by Dip Flash at 8:11 PM on March 20, 2023 [6 favorites]
But that's not any solace to someone whose life has been impacted, and I really hope that medicine takes this more seriously and finds better interventions.
posted by Dip Flash at 8:11 PM on March 20, 2023 [6 favorites]
Around a third of COVID cases is what was predicted, and is actually less than what current research agrees on as a whole is what happened. In the US we have 3 million people missing from the labor force, a 30% increase in disability claims, and continued supply chain issues due to labor shortage (note that these numbers don’t all add up to a third of cases because not everyone will stop working, all the 3s is weird though). The catastrophic impacts are here and visible. If you’re not seeing them that doesn’t mean they aren’t there.
posted by brook horse at 8:21 PM on March 20, 2023
posted by brook horse at 8:21 PM on March 20, 2023
This isn't a prevalence study.
Also, though economists apparently struggle to find their own butts with two hands and a mirrored wall, I think this headline might indicate there does seem to be some concerning (in)visibility and catastrophic impacts: Millions of US Workers Are Still Missing After The Pandemic. Where Did They Go?
The secret: a lot of them are poor, that's why some people don't notice their absence.
posted by Lyn Never at 8:25 PM on March 20, 2023 [4 favorites]
Also, though economists apparently struggle to find their own butts with two hands and a mirrored wall, I think this headline might indicate there does seem to be some concerning (in)visibility and catastrophic impacts: Millions of US Workers Are Still Missing After The Pandemic. Where Did They Go?
The secret: a lot of them are poor, that's why some people don't notice their absence.
posted by Lyn Never at 8:25 PM on March 20, 2023 [4 favorites]
My own fully vaccinated course took several months and I continue to have cardiac and cognitive issues that are enough to make me avoidant of reinfection but nonetheless nothing I can see a reason to fixate on, because quite simply there is jack shit anyone can do.
What we can do, but have by and large decided not to do, is public health: masks, ventilation, filtration.
I know you were addressing a different question (what can be done, after the fact?) and I can’t argue with your diagnosis there (“jack shit”). That’s true of the disease I work on too, which is why for my disease, the focus has moved to prevention. Will it work, I don’t know, but it’s better than settling for jack shit.
Masks, ventilation, filtration.
posted by eirias at 8:34 PM on March 20, 2023 [12 favorites]
What we can do, but have by and large decided not to do, is public health: masks, ventilation, filtration.
I know you were addressing a different question (what can be done, after the fact?) and I can’t argue with your diagnosis there (“jack shit”). That’s true of the disease I work on too, which is why for my disease, the focus has moved to prevention. Will it work, I don’t know, but it’s better than settling for jack shit.
Masks, ventilation, filtration.
posted by eirias at 8:34 PM on March 20, 2023 [12 favorites]
Millions of US Workers Are Still Missing After The Pandemic. Where Did They Go?
An article which sets out (a) the uncertainty around the numbers and (b) the multiple and probably partially overlapping explanations (e.g., there's no clean way to identify an older person whose retirement may have been prompted in part by COVID health impacts) for the unexpectedly low working population.
If people are under the impression that claiming there's a long COVID catastrophe going on when so many people don't even know anyone with symptoms lasting more than a few months is going to prompt better mitigation efforts...it's not. Maybe it feels better for some to think you've been swept away by a widespread catastrophe than to think you're in a smaller, genuinely injured group being negligently left behind by society, I don't know. But as a rhetorical move, it is a dud. Eagerness to see a mass disabling event is not broadly appealing. I don't think this approach is helping.
a 30% increase in disability claims
As far as I can tell, this is based on one private study done in late 2020 which by definition couldn't even capture most long COVID sufferers. (You can see the SSDI numbers here.)
posted by praemunire at 10:10 PM on March 20, 2023 [14 favorites]
An article which sets out (a) the uncertainty around the numbers and (b) the multiple and probably partially overlapping explanations (e.g., there's no clean way to identify an older person whose retirement may have been prompted in part by COVID health impacts) for the unexpectedly low working population.
If people are under the impression that claiming there's a long COVID catastrophe going on when so many people don't even know anyone with symptoms lasting more than a few months is going to prompt better mitigation efforts...it's not. Maybe it feels better for some to think you've been swept away by a widespread catastrophe than to think you're in a smaller, genuinely injured group being negligently left behind by society, I don't know. But as a rhetorical move, it is a dud. Eagerness to see a mass disabling event is not broadly appealing. I don't think this approach is helping.
a 30% increase in disability claims
As far as I can tell, this is based on one private study done in late 2020 which by definition couldn't even capture most long COVID sufferers. (You can see the SSDI numbers here.)
posted by praemunire at 10:10 PM on March 20, 2023 [14 favorites]
Yeah my cardiologist who specializes in POTS and dysautonomia went from being able to see me the same week I called for an appointment to being booked three months out. When we talk, he characterizes the increase in patients as a direct result of covid and uses the words “long covid.” So, I think your assertion that no doctors are seeing this had a rather small n. Because my primary, immunologist and pulmonologist ALSO have talked to me about the possibility increase in patients as being due to long covid.
And there’s an ICD10 code, which they don’t make for things that don’t exist.
But excellent example of why a health records search is going to be useless for looking at prevalence. It sure isn’t going to return any of your patients, regardless of how they’re doing.
posted by Bottlecap at 10:42 PM on March 20, 2023 [12 favorites]
And there’s an ICD10 code, which they don’t make for things that don’t exist.
But excellent example of why a health records search is going to be useless for looking at prevalence. It sure isn’t going to return any of your patients, regardless of how they’re doing.
posted by Bottlecap at 10:42 PM on March 20, 2023 [12 favorites]
My own fully vaccinated course took several months and I continue to have cardiac and cognitive issues
Out of curiosity, are you diagnosing this as long covid?
posted by trig at 12:14 AM on March 21, 2023 [10 favorites]
Out of curiosity, are you diagnosing this as long covid?
posted by trig at 12:14 AM on March 21, 2023 [10 favorites]
Cardiac issues are easy to pinpoint with modern technology. On the consumer end of things, something as cheap as an $80 Fitbit tracker will log heart-rate, it doesn't need to be an $800 iWatch or an actual ECG machine. If long covid is causing you to get palpitations, and your heart-rate is jumping to 120, 140 randomly; that's an abnormal, but treatable cardiac condition - a licensed doctor is able to prescribe beta-blockers to actually make that problem go away. Sorta similar with lung issues.
The problem is the crippling fatigue, along with what's been termed post exertion symptom exacerbation thats core. If you can't even make it to a doctor's office because you're afflicted to the point of being unable to get out of bed, you don't even register in the system.
posted by fragmede at 2:29 AM on March 21, 2023
The problem is the crippling fatigue, along with what's been termed post exertion symptom exacerbation thats core. If you can't even make it to a doctor's office because you're afflicted to the point of being unable to get out of bed, you don't even register in the system.
posted by fragmede at 2:29 AM on March 21, 2023
This is why I absolutely believe long covid exists and it's because of my own experience involving a pretty significant effect on my cognitive abilities following a particularly nasty flu. My life changed pretty dramatically as a result. Funny thing tho: in the ensuing chaos, it took me almost 10 years to realize the connection. It also just never occurred to me before that this was even a thing that was possible? Such profound and possibly permanent changes as a result of a viral infection? Sounds bananas, and yet here we are.
I just realized this timeline also means that I joined Metafilter shortly after that flu.
coincidence?
posted by some loser at 3:19 AM on March 21, 2023 [2 favorites]
I just realized this timeline also means that I joined Metafilter shortly after that flu.
coincidence?
posted by some loser at 3:19 AM on March 21, 2023 [2 favorites]
Mod note: One removed. Just speak for yourself, and don't make things personal about another member.
posted by taz (staff) at 3:49 AM on March 21, 2023
posted by taz (staff) at 3:49 AM on March 21, 2023
Nobody here is saying Long Covid doesn’t exist.
posted by kimberussell at 4:34 AM on March 21, 2023 [3 favorites]
posted by kimberussell at 4:34 AM on March 21, 2023 [3 favorites]
I wish the language for this would evolve a bit further because currently it is so imprecise as to be unhelpful. Right now the term "long covid" includes people with very minor, quite short-term symptoms (eg cough that lingers for five weeks), people with symptoms that might be severe but fully resolve after a few months, and people with extremely long-lasting (perhaps permanent) symptoms that can be life-changing. But those aren't all the same, and certainly aren't equally concerning, and because they are all lumped into one number, the prevalence studies sound scarier than they really are.
posted by Dip Flash at 6:17 AM on March 21, 2023 [6 favorites]
posted by Dip Flash at 6:17 AM on March 21, 2023 [6 favorites]
Nobody here is saying Long Covid doesn’t exist.
Oh?
Debating the reality of long Covid it is kind of a complex issue. then but pretty much every doctor has not seen anything that resembles "long Covid" as reported in the major news outlets other than a number of cases that take three or four months sometimes to seem to resolve.
They go on and make it pretty clear they think it's a psychological issue.
posted by OnTheLastCastle at 6:22 AM on March 21, 2023
Oh?
Debating the reality of long Covid it is kind of a complex issue. then but pretty much every doctor has not seen anything that resembles "long Covid" as reported in the major news outlets other than a number of cases that take three or four months sometimes to seem to resolve.
They go on and make it pretty clear they think it's a psychological issue.
posted by OnTheLastCastle at 6:22 AM on March 21, 2023
But also the same poster says:
If you have longstanding debilitating symptoms after covid, then by logic you probably have long covid, if a thorough workup fails to reveal something else (autoimmune, vitamin deficiency, sleep apnea, etc).
Which is not at all saying "long covid doesn't exist."
posted by kimberussell at 6:32 AM on March 21, 2023 [6 favorites]
If you have longstanding debilitating symptoms after covid, then by logic you probably have long covid, if a thorough workup fails to reveal something else (autoimmune, vitamin deficiency, sleep apnea, etc).
Which is not at all saying "long covid doesn't exist."
posted by kimberussell at 6:32 AM on March 21, 2023 [6 favorites]
The thing I find incredibly frustrating about this discourse around prevalence (okay, beyond the fact that the US of fucking A has somehow never managed to keep good statistics on such things during this whole pandemic, and those of us who want estimates have had to jury rig them ourselves with raw data sourced from badly funded county health departments and the fucking Atlantic) is that even if we stipulate that it’s some lower number, say 5%, and that most of this is actually acute courses that last much longer than a cold and/or new onset chronic disease — that’s still a problem. I have never believed the eye watering numbers were all ME/CFS like illness but like — 5% of everybody winding up with some new chronic ailment or months of stalled recovery because of an airborne disease is a lot!! Even if most of them can still work!! Even if the rates among the vaccinated are cut in half! Two whole percent of all of America is still a lot! Never mind two percent of all the world! I would happily stipulate all of this to get us to a place where we can talk about what that actually costs, and what we can and should spend to make it better.
People these days look at us continued conservatives as though we are paralyzed by fear of sharks. But this is not a shark attack kind of situation, this is a heart attack kind of situation: common enough to require some kind of response, which makes it boring, which makes everyone tune out and order another fucking cheeseburger.
posted by eirias at 6:42 AM on March 21, 2023 [8 favorites]
People these days look at us continued conservatives as though we are paralyzed by fear of sharks. But this is not a shark attack kind of situation, this is a heart attack kind of situation: common enough to require some kind of response, which makes it boring, which makes everyone tune out and order another fucking cheeseburger.
posted by eirias at 6:42 AM on March 21, 2023 [8 favorites]
They go on and make it pretty clear they think it's a psychological issue.
posted by OnTheLastCastle at 6:22 AM on March 21 [+] [!]
Hi. No, if that's your take away then one of us is being obtuse or inarticulate. But one thing I know for certain after 30 years in medical practice is that beating my head into a wall or walking into a buzz saw of patient perception is a fool's errand, and frankly why quite a few healthcare workers quit or walked away from the job during pandemic. I came close.
Regarding a post upthread about whether or not I considered myself as having long Covid given the months it took to recover, I did not. But that's partly or wholly because of the fact that all types of medical issues, from concussions to back pain to sporadic upper respiratory illnesses to recovery from hospitalizations and surgeries have what is called a "convalescent phase " (as opposed to the "acute phase".
If you think of a medical issue as a brushfire, the acute phase of the illness or situation is the active burning, but it's also a bunch of firefighters who show up and might be a few calm folks who quietly put out the fire or a whole bunch of bored hopped up nutjobs in the mood to really beat the shit out of things and get all their equipment out and have a blast. Convalescence is the recovery, waiting for the grass to grow back green and healthy. It might be a quiet week or two of letting grass grow or it might be months of repair. Part of the problem that I see with long Cove it is that quite a few things I've read to find it as just anything lasting 8 to 12 weeks. Maybe that has been revised but that's an absurdly short time. For a recovery from something like Covid, so it can't help but inflate the numbers wildly.
There's not really any opportunity or option in primary care to just stay home and rest. You go work, because there's a ton of patients that need care and there's nobody stepping in to take over. And you just have to figure that the body will repair itself because inevitably, in most cases it does. So if you're the outlier, as shitty as it is, waiting around to find out isn't going to do anybody a bit of good.
Medical threads always get a little bit derailed. Most practitioners really have your best interest at heart. When we don't really know what to tell patients the last thing we want to do is instill a sense of hopelessness. If patients regard that as dismissive then there's not much else we can do. I've had those encounters, they're baffling, but ultimately most doctors with resilience can see that the problem is not the practitioner, and whatever the trigger is in the patient it's not anything we're ever going to go back in time and fix.
posted by docpops at 7:21 AM on March 21, 2023 [19 favorites]
posted by OnTheLastCastle at 6:22 AM on March 21 [+] [!]
Hi. No, if that's your take away then one of us is being obtuse or inarticulate. But one thing I know for certain after 30 years in medical practice is that beating my head into a wall or walking into a buzz saw of patient perception is a fool's errand, and frankly why quite a few healthcare workers quit or walked away from the job during pandemic. I came close.
Regarding a post upthread about whether or not I considered myself as having long Covid given the months it took to recover, I did not. But that's partly or wholly because of the fact that all types of medical issues, from concussions to back pain to sporadic upper respiratory illnesses to recovery from hospitalizations and surgeries have what is called a "convalescent phase " (as opposed to the "acute phase".
If you think of a medical issue as a brushfire, the acute phase of the illness or situation is the active burning, but it's also a bunch of firefighters who show up and might be a few calm folks who quietly put out the fire or a whole bunch of bored hopped up nutjobs in the mood to really beat the shit out of things and get all their equipment out and have a blast. Convalescence is the recovery, waiting for the grass to grow back green and healthy. It might be a quiet week or two of letting grass grow or it might be months of repair. Part of the problem that I see with long Cove it is that quite a few things I've read to find it as just anything lasting 8 to 12 weeks. Maybe that has been revised but that's an absurdly short time. For a recovery from something like Covid, so it can't help but inflate the numbers wildly.
There's not really any opportunity or option in primary care to just stay home and rest. You go work, because there's a ton of patients that need care and there's nobody stepping in to take over. And you just have to figure that the body will repair itself because inevitably, in most cases it does. So if you're the outlier, as shitty as it is, waiting around to find out isn't going to do anybody a bit of good.
Medical threads always get a little bit derailed. Most practitioners really have your best interest at heart. When we don't really know what to tell patients the last thing we want to do is instill a sense of hopelessness. If patients regard that as dismissive then there's not much else we can do. I've had those encounters, they're baffling, but ultimately most doctors with resilience can see that the problem is not the practitioner, and whatever the trigger is in the patient it's not anything we're ever going to go back in time and fix.
posted by docpops at 7:21 AM on March 21, 2023 [19 favorites]
And you just have to figure that the body will repair itself because inevitably, in most cases it does. So if you're the outlier, as shitty as it is, waiting around to find out isn't going to do anybody a bit of good
Could you elaborate a little bit? Are you saying that telling a patient it will take time but you are likely to recover is better than saying they have long covid?
posted by tiny frying pan at 7:28 AM on March 21, 2023 [1 favorite]
Could you elaborate a little bit? Are you saying that telling a patient it will take time but you are likely to recover is better than saying they have long covid?
posted by tiny frying pan at 7:28 AM on March 21, 2023 [1 favorite]
I believe the question was not about the months to recover, but about you reporting continuing to have cardiac and cognitive issues, which by definition is not full recovery.
posted by brook horse at 7:29 AM on March 21, 2023
posted by brook horse at 7:29 AM on March 21, 2023
Could you elaborate a little bit? Are you saying that telling a patient it will take time but you are likely to recover is better than saying they have long covid?
posted by tiny frying pan at 7:28 AM on March 21 [+] [!]
I'm saying that I think it depends somewhat on the patient. It's completely fine to call something a name even when we're not certain. But once you do that it can lead to a lot of psychological overlay even in somebody with very robust mental health. A good example is low back pain. If I get an MRI on a patient I always tell the patient that once you're past 20 years old it's going to look like a war zone and the radiologic report is going to read like a novel of misery. Seeing all those changes of aging and walking upright can be scary. So it can be hard to pull patients out of that mindset that something is really fucked up and that there's actually a simple pathway through most back pain. I can't count the number of people that came to me after decades of obsessing about their back pain because some idiot physician had told him they have "bulging discs "which literally every person has after a few decades of walking upright. Tons of illnesses are like that.
I've had many many patients contacting me four weeks, six or eight weeks after getting Covid saying they feel like shit for a lot of reasons. I've learned over decades that it's far better to set realistic expectations and offer hope, because frankly it's not a lie to say that every case I've seen has recovered fully, and so far that's the model that's helped people the most.
A few years back we used to tell teenagers with concussions to go home and sit in a dark room, turn off their phones and not overstimulate themselves. All it did was make them anxious and symptom focused. Now we let them run free and do whatever the hell they want and they recover in probably half the time. My model is generally, and this has the weight of evidence behind it, live as much of your life as you can because the simple act of feeling your body and brain do even minimal normal things is reassuring and healing. People with chronic back pain who are told to do normal activities despite the pain have far better recovery and symptoms scores than people that are told to "rest and listen to your body "i.e. refrain from doing anything painful. I don't know why this is but I have my own theories now that I'm nearing 60
posted by docpops at 7:36 AM on March 21, 2023 [30 favorites]
posted by tiny frying pan at 7:28 AM on March 21 [+] [!]
I'm saying that I think it depends somewhat on the patient. It's completely fine to call something a name even when we're not certain. But once you do that it can lead to a lot of psychological overlay even in somebody with very robust mental health. A good example is low back pain. If I get an MRI on a patient I always tell the patient that once you're past 20 years old it's going to look like a war zone and the radiologic report is going to read like a novel of misery. Seeing all those changes of aging and walking upright can be scary. So it can be hard to pull patients out of that mindset that something is really fucked up and that there's actually a simple pathway through most back pain. I can't count the number of people that came to me after decades of obsessing about their back pain because some idiot physician had told him they have "bulging discs "which literally every person has after a few decades of walking upright. Tons of illnesses are like that.
I've had many many patients contacting me four weeks, six or eight weeks after getting Covid saying they feel like shit for a lot of reasons. I've learned over decades that it's far better to set realistic expectations and offer hope, because frankly it's not a lie to say that every case I've seen has recovered fully, and so far that's the model that's helped people the most.
A few years back we used to tell teenagers with concussions to go home and sit in a dark room, turn off their phones and not overstimulate themselves. All it did was make them anxious and symptom focused. Now we let them run free and do whatever the hell they want and they recover in probably half the time. My model is generally, and this has the weight of evidence behind it, live as much of your life as you can because the simple act of feeling your body and brain do even minimal normal things is reassuring and healing. People with chronic back pain who are told to do normal activities despite the pain have far better recovery and symptoms scores than people that are told to "rest and listen to your body "i.e. refrain from doing anything painful. I don't know why this is but I have my own theories now that I'm nearing 60
posted by docpops at 7:36 AM on March 21, 2023 [30 favorites]
I believe the question was not about the months to recover, but about you reporting continuing to have cardiac and cognitive issues, which by definition is not full recovery.
posted by brook horse at 7:29 AM on March 21 [+] [!]
I'm fairly certain that my cardiac and cognitive issues, while easily attributable to long Covid, are far more likely due to the fact that I am old, overworked, and drink way too much fucking coffee. But if I was sitting in court or in front of a disability determination board I have no doubt I could pass symptoms off as Covid related even though I don't think they are. I know I am out of shape and getting old. So no, I do not think it has anything to do with Covid.
I had transverse myelitis 25 years ago. There was a 50-50 chance it would move into the brain and essentially become multiple sclerosis. So every time I couldn't remember the name of some rock bands drummer from the 70s I assumed it was a demyelinating lesion starting. The human brain is insanely powerful, you have to be able to compartmentalize and try to figure out what is real and what is psychosomatic, at least that's how I have dealt and try to help patients deal. It is not the path everyone wishes to take.
posted by docpops at 7:40 AM on March 21, 2023 [8 favorites]
posted by brook horse at 7:29 AM on March 21 [+] [!]
I'm fairly certain that my cardiac and cognitive issues, while easily attributable to long Covid, are far more likely due to the fact that I am old, overworked, and drink way too much fucking coffee. But if I was sitting in court or in front of a disability determination board I have no doubt I could pass symptoms off as Covid related even though I don't think they are. I know I am out of shape and getting old. So no, I do not think it has anything to do with Covid.
I had transverse myelitis 25 years ago. There was a 50-50 chance it would move into the brain and essentially become multiple sclerosis. So every time I couldn't remember the name of some rock bands drummer from the 70s I assumed it was a demyelinating lesion starting. The human brain is insanely powerful, you have to be able to compartmentalize and try to figure out what is real and what is psychosomatic, at least that's how I have dealt and try to help patients deal. It is not the path everyone wishes to take.
posted by docpops at 7:40 AM on March 21, 2023 [8 favorites]
As an immunocompromised person, the idea that anyone is going to help the people suffering from Long Covid is hilarious. There are seven million immunocompromised people in the US alone, and nobody is doing jack to make it possible for us to safely rejoin society. We have been written off as casualties.
As seen in this thread, the only thing you'll get out of the overstressed, underprepared medical system is patronizing dismissal. Which is also the only thing you'll get out of government programs ostensibly designed to help. Which is better than what you'll get from the general public, that's usually insulting and angry dismissal.
Help isn't coming.
The new motto of the United States is 'sucks to be you.'
posted by MrVisible at 8:14 AM on March 21, 2023 [12 favorites]
As seen in this thread, the only thing you'll get out of the overstressed, underprepared medical system is patronizing dismissal. Which is also the only thing you'll get out of government programs ostensibly designed to help. Which is better than what you'll get from the general public, that's usually insulting and angry dismissal.
Help isn't coming.
The new motto of the United States is 'sucks to be you.'
posted by MrVisible at 8:14 AM on March 21, 2023 [12 favorites]
As seen in this thread, the only thing you'll get out of the overstressed, underprepared medical system is patronizing dismissal.
It's pretty gross to hold an individual responsible for the state of healthcare in this country, not to mention characterizing what docpops has said as 'patronizing dismissal' really isn't accurate.
posted by Jarcat at 9:22 AM on March 21, 2023 [15 favorites]
It's pretty gross to hold an individual responsible for the state of healthcare in this country, not to mention characterizing what docpops has said as 'patronizing dismissal' really isn't accurate.
posted by Jarcat at 9:22 AM on March 21, 2023 [15 favorites]
It's pretty gross to hold an individual responsible for the state of healthcare in this country, not to mention characterizing what docpops has said as 'patronizing dismissal' really isn't accurate.
It’s funny — as we speak I’m having a friendly exchange elsewhere with another friend about this same thing, but as it pertains not to COVID but to reproductive medicine. When I read stories about pregnant women in medical crisis who must be brought to the brink of death before a hospital will sign off on life sustaining care for fear of legal repercussions (there was one this morning over in Slate), I feel exactly as MrVisible does here. Regardless of whether it’s fair, that feeling is an obstacle to many things — among them, my relationship with my provider (I live in Wisconsin and am near the end of my childbearing years so these crises really do not seem remote to me). Anomie is a cost. Telling people their lives don’t matter frays the social fabric. I don’t see how it can do otherwise.
posted by eirias at 9:29 AM on March 21, 2023 [8 favorites]
It’s funny — as we speak I’m having a friendly exchange elsewhere with another friend about this same thing, but as it pertains not to COVID but to reproductive medicine. When I read stories about pregnant women in medical crisis who must be brought to the brink of death before a hospital will sign off on life sustaining care for fear of legal repercussions (there was one this morning over in Slate), I feel exactly as MrVisible does here. Regardless of whether it’s fair, that feeling is an obstacle to many things — among them, my relationship with my provider (I live in Wisconsin and am near the end of my childbearing years so these crises really do not seem remote to me). Anomie is a cost. Telling people their lives don’t matter frays the social fabric. I don’t see how it can do otherwise.
posted by eirias at 9:29 AM on March 21, 2023 [8 favorites]
It's pretty gross to hold an individual responsible for the state of healthcare in this country, not to mention characterizing what docpops has said as 'patronizing dismissal' really isn't accurate.
I've known a few people who've left healthcare altogether because they're worn out from a combination of factors: corporatized hospitals and clinics who demand a certain number of patient visits and treatments in a given day, a pandemic that pushed many of the providers to the brink of nervous breakdown and a public who feels increasingly like they can just talk to doctors any why they feel like as evidenced by the above. Unfortunately some problems simply can't be solved and physicians are exasperated about what to do because medicine isn't like an episode of Dr. House.
posted by drstrangelove at 9:32 AM on March 21, 2023 [11 favorites]
I've known a few people who've left healthcare altogether because they're worn out from a combination of factors: corporatized hospitals and clinics who demand a certain number of patient visits and treatments in a given day, a pandemic that pushed many of the providers to the brink of nervous breakdown and a public who feels increasingly like they can just talk to doctors any why they feel like as evidenced by the above. Unfortunately some problems simply can't be solved and physicians are exasperated about what to do because medicine isn't like an episode of Dr. House.
posted by drstrangelove at 9:32 AM on March 21, 2023 [11 favorites]
Doctor's hit a wall during the pandemic because it was the first time when we actually saw human behavior exhibiting a sort of malevolence that we had yet to encounter on such a large and personal scale. It wasn't the stupidity and self-destructiveness (which we are well accustomed to and which we all suffer from to a certain degree as individuals). It was the willful, aggressive, bordering-on-violent behavior surrounding vaccinations and masking and ignorance that we all could feel putting us at risk every day. The same absolute fucking morons that didn't think the pandemic was real were the same absolute fucking morons that would have their mask around their neck and lie to our screeners and come in actively ill. Anybody that had a nest egg and could walk from primary care either did so or came close to doing so. It's still there but most of us have just moved past it and watching people off themselves is just part of normal life now. We're not wasting our breath.
posted by docpops at 9:57 AM on March 21, 2023 [16 favorites]
posted by docpops at 9:57 AM on March 21, 2023 [16 favorites]
"It's pretty gross to hold an individual responsible for the state of healthcare in this country, not to mention characterizing what docpops has said as 'patronizing dismissal' really isn't accurate.
Pointing out that the behavior seen in this thread serves as an excellent example of the sort of treatment that can be expected of the health care system isn't the same as holding someone responsible for the state of healthcare in this country. So much so that I'd say you're putting words in my mouth, which I don't appreciate. It's a nasty and unproductive way to spin my comment.
posted by MrVisible at 10:10 AM on March 21, 2023 [4 favorites]
Pointing out that the behavior seen in this thread serves as an excellent example of the sort of treatment that can be expected of the health care system isn't the same as holding someone responsible for the state of healthcare in this country. So much so that I'd say you're putting words in my mouth, which I don't appreciate. It's a nasty and unproductive way to spin my comment.
posted by MrVisible at 10:10 AM on March 21, 2023 [4 favorites]
I actually rather like the responses that came from my comment; I learned some things and heard perspectives I didn't hold. I'd call that productive.
posted by Jarcat at 10:15 AM on March 21, 2023 [2 favorites]
posted by Jarcat at 10:15 AM on March 21, 2023 [2 favorites]
a thought on diagnosis of long term illness/injury.
I suffer from permanent nerve damage due to an old, comparatively minor injury that just never got better -- in fact, it's gradually gotten worse. The original injury was over twenty years ago. For a few years, I'd see a doctor and they'd go after it like it was something that could be gotten rid of via treatment (meds, physio, massage, Eastern medicine etc).
But at some vague point after all manner of stuff that didn't work, it officially became permanent nerve damage. Not because anything in particular had shown up in an x-ray or a cat-scan or an MRI but because, after all these years, I still fucking had it.
I imagine it will be similar with Long Covid, and obviously already is for some. At some point, symptoms are no longer symptoms, they're "normal", part of the burden you carry with you every day.
posted by philip-random at 10:59 AM on March 21, 2023 [5 favorites]
I suffer from permanent nerve damage due to an old, comparatively minor injury that just never got better -- in fact, it's gradually gotten worse. The original injury was over twenty years ago. For a few years, I'd see a doctor and they'd go after it like it was something that could be gotten rid of via treatment (meds, physio, massage, Eastern medicine etc).
But at some vague point after all manner of stuff that didn't work, it officially became permanent nerve damage. Not because anything in particular had shown up in an x-ray or a cat-scan or an MRI but because, after all these years, I still fucking had it.
I imagine it will be similar with Long Covid, and obviously already is for some. At some point, symptoms are no longer symptoms, they're "normal", part of the burden you carry with you every day.
posted by philip-random at 10:59 AM on March 21, 2023 [5 favorites]
The human brain is insanely powerful, you have to be able to compartmentalize and try to figure out what is real and what is psychosomatic
Apropos of nothing, this just really resonated with me. Last year I had a tingling on the outside edge of my hand for months. I went to PT first, then my primary made the referral to neuro to check for carpal tunnel or the other nerve thing in your elbow. I went through the horrible electrocuting test, neuro said everything was 100% fine with the nerves, and that same afternoon my tingling stopped for good. I'm very lucky that condition had a diagnostic test because I am absolutely a hypochondriac, and who knows what would have happened if it were ambiguous.
My dad suffered from CFS after a bout of adult mono about 10 years ago. The 2 years he stayed in the house, there was no improvement in symptoms. I wasn't keeping up on the day-to-day so I don't know whether symptoms allieviated on their own to allow him to get out more, or whether he just gritted his way through at the start, but once he started going for daily walks everything started lessening, and he 100% recovered.
posted by hwyengr at 12:39 PM on March 21, 2023 [3 favorites]
Apropos of nothing, this just really resonated with me. Last year I had a tingling on the outside edge of my hand for months. I went to PT first, then my primary made the referral to neuro to check for carpal tunnel or the other nerve thing in your elbow. I went through the horrible electrocuting test, neuro said everything was 100% fine with the nerves, and that same afternoon my tingling stopped for good. I'm very lucky that condition had a diagnostic test because I am absolutely a hypochondriac, and who knows what would have happened if it were ambiguous.
My dad suffered from CFS after a bout of adult mono about 10 years ago. The 2 years he stayed in the house, there was no improvement in symptoms. I wasn't keeping up on the day-to-day so I don't know whether symptoms allieviated on their own to allow him to get out more, or whether he just gritted his way through at the start, but once he started going for daily walks everything started lessening, and he 100% recovered.
posted by hwyengr at 12:39 PM on March 21, 2023 [3 favorites]
Conversely I've known a lot of people that pushed through their symptoms to do regular activities for years because modern capitalism doesn't let you just... stop, and/or because their doctors told them to. My partner had issues with exertion causing nausea and headaches; doctors told them to exercise more.
"But I get a pounding headache from 10 minutes of light exercise. I can't even do the dishes for 15 minutes without feeling like throwing up."
"Hm, I've never heard of that happening. Take an ibuprofen and then keep exercising. Try to lose weight."
Since you can't simply stop doing the dishes, they kept doing their regular activities and trying to exercise even though it left them basically nonfunctional afterward. It never got better. In fact, they lost 20 lbs and it got worse.
Three years later a neurologist determined they've had a status migraine all this time, and exercise is pretty much the worst thing you can do during a migraine. Instantly makes it worse. They always had low-level nausea (dismissed as anxiety) and headaches (dismissed as a result of whiplash from a car accident as a teenager), and any exertion spiked it to intolerable. Now they're on a CGRP and significantly improved. No amount of continuing to push through the pain would have made a difference in their case. And I've known too many cases where doctors suggest "just keep doing your normal activities and exercise more" and end there.
Which, btw, is not what physical therapists have ever recommended me. I've seen a lot of them for a lot of issues, including chronic lower back pain, and all of them recommended I reduce activities that caused me pain or other issues (my balance PT lectured me endlessly on the unnecessary risks I was taking, such as standing up to put my pants on in the morning) so that I would be able to focus on targeted improvement through the physical therapy regime. They also stressed that if the regime was causing pain, I needed to back off. My hand PT tested my grip strength at 50 lbs per hand, and had me start on the grip strengthener at 50 lbs. That pretty much immediately caused pain, so she had me go down to 20 lbs and gave me a variety of assistive tools to reduce the strain on my hands day-to-day. Lo and behold, backing off on putting daily strain on underconditioned muscles while targeting specific muscles with light activity--much less than normally demanded of my hands--did loads more for me than years of pushing through using my hands for "normal activities" and getting frustrated that it never hurt any less to do them.
Health psychology is one of my niches; in all of the chronically ill individuals I've worked with, I don't know a single one who hadn't been trying to push through their symptoms for years. Most of them needed to be practically badgered into taking a break. Like... a fifteen minute one. I'm not joking. I have had multiple clients where one of the treatment goals is "actually take your fifteen minute break at work" because they DON'T.
I am sure people who get symptoms and then simply give up all normal activities exist. But I think it's easy for doctors to assume that's what's happening when in many cases it's not. And many patients need to actually reduce their activities so they have space in their lives to focus on light, focused activity--rather than using up all their energy on the demands of capitalism and modern life. Regularly going to the grocery store in-person never did anything for my back pain, but ordering groceries online so I'd have the energy to do 20 minutes of targeted PT sure as hell did.
posted by brook horse at 3:26 PM on March 21, 2023 [22 favorites]
"But I get a pounding headache from 10 minutes of light exercise. I can't even do the dishes for 15 minutes without feeling like throwing up."
"Hm, I've never heard of that happening. Take an ibuprofen and then keep exercising. Try to lose weight."
Since you can't simply stop doing the dishes, they kept doing their regular activities and trying to exercise even though it left them basically nonfunctional afterward. It never got better. In fact, they lost 20 lbs and it got worse.
Three years later a neurologist determined they've had a status migraine all this time, and exercise is pretty much the worst thing you can do during a migraine. Instantly makes it worse. They always had low-level nausea (dismissed as anxiety) and headaches (dismissed as a result of whiplash from a car accident as a teenager), and any exertion spiked it to intolerable. Now they're on a CGRP and significantly improved. No amount of continuing to push through the pain would have made a difference in their case. And I've known too many cases where doctors suggest "just keep doing your normal activities and exercise more" and end there.
Which, btw, is not what physical therapists have ever recommended me. I've seen a lot of them for a lot of issues, including chronic lower back pain, and all of them recommended I reduce activities that caused me pain or other issues (my balance PT lectured me endlessly on the unnecessary risks I was taking, such as standing up to put my pants on in the morning) so that I would be able to focus on targeted improvement through the physical therapy regime. They also stressed that if the regime was causing pain, I needed to back off. My hand PT tested my grip strength at 50 lbs per hand, and had me start on the grip strengthener at 50 lbs. That pretty much immediately caused pain, so she had me go down to 20 lbs and gave me a variety of assistive tools to reduce the strain on my hands day-to-day. Lo and behold, backing off on putting daily strain on underconditioned muscles while targeting specific muscles with light activity--much less than normally demanded of my hands--did loads more for me than years of pushing through using my hands for "normal activities" and getting frustrated that it never hurt any less to do them.
Health psychology is one of my niches; in all of the chronically ill individuals I've worked with, I don't know a single one who hadn't been trying to push through their symptoms for years. Most of them needed to be practically badgered into taking a break. Like... a fifteen minute one. I'm not joking. I have had multiple clients where one of the treatment goals is "actually take your fifteen minute break at work" because they DON'T.
I am sure people who get symptoms and then simply give up all normal activities exist. But I think it's easy for doctors to assume that's what's happening when in many cases it's not. And many patients need to actually reduce their activities so they have space in their lives to focus on light, focused activity--rather than using up all their energy on the demands of capitalism and modern life. Regularly going to the grocery store in-person never did anything for my back pain, but ordering groceries online so I'd have the energy to do 20 minutes of targeted PT sure as hell did.
posted by brook horse at 3:26 PM on March 21, 2023 [22 favorites]
My dad suffered from CFS after a bout of adult mono about 10 years ago. The 2 years he stayed in the house, there was no improvement in symptoms. I wasn't keeping up on the day-to-day so I don't know whether symptoms allieviated on their own to allow him to get out more, or whether he just gritted his way through at the start, but once he started going for daily walks everything started lessening, and he 100% recovered.
This is actually very common. So many people are sick to some degree with a post-viral or similar illness for three months, six months, or even a couple years and then they gradually get better. After a few years, people don't seem to get better as much. I'm certain that this is happening with Long Covid. Many people, though obviously not everyone, had symptoms that hung around for a few months and then gradually got better. We don't know why recovery tends to happen on this timeline, because we don't understand the mechanisms.
Unfortunately, what this experience leads to is getting the causality wrong (instead of thinking that someone got better so they could take the walks, people think that someone got better because they took the walks). That basic error, along with some pretty terrible biases in the psychiatric and medical professions and society in general, has led to a few decades of often harmful research and intervention. We've had it backwards for so long.
We have a highly skewed perception of ME/CFS and post-viral illness, because it's basically impossible to get a diagnosis until you've already passed through those first couple years. In theory, you only need six months, but the reality is almost no one gets that diagnosis or knows enough to consider it for themselves in those early months. I think the result is that the vast majority of cases are never diagnosed, because they resolve on their own before they can be. Unfortunately, where that leaves those of us who don't get better is in a pretty bad spot with almost no research and very poor understanding of the reality from the medical profession.
posted by ssg at 9:05 PM on March 21, 2023 [9 favorites]
This is actually very common. So many people are sick to some degree with a post-viral or similar illness for three months, six months, or even a couple years and then they gradually get better. After a few years, people don't seem to get better as much. I'm certain that this is happening with Long Covid. Many people, though obviously not everyone, had symptoms that hung around for a few months and then gradually got better. We don't know why recovery tends to happen on this timeline, because we don't understand the mechanisms.
Unfortunately, what this experience leads to is getting the causality wrong (instead of thinking that someone got better so they could take the walks, people think that someone got better because they took the walks). That basic error, along with some pretty terrible biases in the psychiatric and medical professions and society in general, has led to a few decades of often harmful research and intervention. We've had it backwards for so long.
We have a highly skewed perception of ME/CFS and post-viral illness, because it's basically impossible to get a diagnosis until you've already passed through those first couple years. In theory, you only need six months, but the reality is almost no one gets that diagnosis or knows enough to consider it for themselves in those early months. I think the result is that the vast majority of cases are never diagnosed, because they resolve on their own before they can be. Unfortunately, where that leaves those of us who don't get better is in a pretty bad spot with almost no research and very poor understanding of the reality from the medical profession.
posted by ssg at 9:05 PM on March 21, 2023 [9 favorites]
>We considered only patients who returned to the hospital for care after COVID-19 diagnosis and therefore an overall neuro-PASC incidence rate could not be reported
So, they are excluding patients with long-COVID who:
a) sought care elsewhere;
b) were too physically unwell to leave their homes to seek care;
c) did not go back to the hospital to seek care for fear of catching COVID again;
d) did not go back to the hospital to seek care because they did not have the money to do so.
posted by chariot pulled by cassowaries
e) did not go back to the clinic because they realised that the medical profession did not want to deal with it, and could be, shall we say, less than professional in the way they impressed that upon the patient.
posted by Pouteria at 10:37 PM on March 21, 2023 [8 favorites]
So, they are excluding patients with long-COVID who:
a) sought care elsewhere;
b) were too physically unwell to leave their homes to seek care;
c) did not go back to the hospital to seek care for fear of catching COVID again;
d) did not go back to the hospital to seek care because they did not have the money to do so.
posted by chariot pulled by cassowaries
e) did not go back to the clinic because they realised that the medical profession did not want to deal with it, and could be, shall we say, less than professional in the way they impressed that upon the patient.
posted by Pouteria at 10:37 PM on March 21, 2023 [8 favorites]
>So, I think your assertion that no doctors are seeing this had a rather small n.
posted by Bottlecap
The lowest formal ranking of evidence in medicine is clinical opinion, and for good reason.
>My model is generally, and this has the weight of evidence behind it, live as much of your life as you can because the simple act of feeling your body and brain do even minimal normal things is reassuring and healing. People with chronic back pain who are told to do normal activities despite the pain have far better recovery and symptoms scores than people that are told to "rest and listen to your body "i.e. refrain from doing anything painful. I don't know why this is but I have my own theories now that I'm nearing 60
posted by docpops
So what happens when that doesn't work? When the patients do what they are advised to do, in good faith, and not only doesn't it work, but often makes them worse? What then? What does that say about those who continue to insist on pathologising patients behaviour and even morality when they report this?
The single most valuable resource in the clinical encounter not training, knowledge, experience, equipment, staff, etc. It is trust. When that is broken, it is all over.
>Health psychology is one of my niches; in all of the chronically ill individuals I've worked with, I don't know a single one who hadn't been trying to push through their symptoms for years.
posted by brook horse
A lot of what might seem like recovery and 'getting on with it' from the outside perspective is actually patients having to make sometimes terrible tradeoffs in life, including learning the hard way to not tell doctors or the rest of the world the truth about it.
When a patient puts on a smile in the clinic and says it is much better now, or even not a problem at all, and thank for your efforts, it is a mistake to infer they are always telling the truth. Well, they kinda are, just not directly, and not the truth the clinician might think they are, let alone want to hear. Ditto for when a patient simply doesn't darken the clinic's door with their presence again. Don't assume they actually got better. They might well have voted with their feet.
Here's a dirty little secret about the medical profession: Medical training, and at least the early years of a graduate's career, select ruthlessly for stamina. It is one of medicine's greatest blind spots and biases. On the whole they really don't get what a lack of stamina and major reduction in basic capacity means, it is quite literally beyond their experience. And they don't want to get it. The professional culture simply does not allow it, regarding it as a weakness to be purged.
When doctors themselves get these kind of health problems, you know what most of them actually do, once they finally accept it is actually happening to them? Shut the fuck up, and never tell their colleagues, because they know exactly what is going to happen to them if they do. They know how these patients are really viewed and treated. So they start lying their arses off, downsizing their career big time, maybe take up a different career, or even early retirement in some form if it is an option, and basically just disappear. Trust me, that happens a lot more to their own than most doctors might want to believe.
posted by Pouteria at 11:49 PM on March 21, 2023 [19 favorites]
posted by Bottlecap
The lowest formal ranking of evidence in medicine is clinical opinion, and for good reason.
>My model is generally, and this has the weight of evidence behind it, live as much of your life as you can because the simple act of feeling your body and brain do even minimal normal things is reassuring and healing. People with chronic back pain who are told to do normal activities despite the pain have far better recovery and symptoms scores than people that are told to "rest and listen to your body "i.e. refrain from doing anything painful. I don't know why this is but I have my own theories now that I'm nearing 60
posted by docpops
So what happens when that doesn't work? When the patients do what they are advised to do, in good faith, and not only doesn't it work, but often makes them worse? What then? What does that say about those who continue to insist on pathologising patients behaviour and even morality when they report this?
The single most valuable resource in the clinical encounter not training, knowledge, experience, equipment, staff, etc. It is trust. When that is broken, it is all over.
>Health psychology is one of my niches; in all of the chronically ill individuals I've worked with, I don't know a single one who hadn't been trying to push through their symptoms for years.
posted by brook horse
A lot of what might seem like recovery and 'getting on with it' from the outside perspective is actually patients having to make sometimes terrible tradeoffs in life, including learning the hard way to not tell doctors or the rest of the world the truth about it.
When a patient puts on a smile in the clinic and says it is much better now, or even not a problem at all, and thank for your efforts, it is a mistake to infer they are always telling the truth. Well, they kinda are, just not directly, and not the truth the clinician might think they are, let alone want to hear. Ditto for when a patient simply doesn't darken the clinic's door with their presence again. Don't assume they actually got better. They might well have voted with their feet.
Here's a dirty little secret about the medical profession: Medical training, and at least the early years of a graduate's career, select ruthlessly for stamina. It is one of medicine's greatest blind spots and biases. On the whole they really don't get what a lack of stamina and major reduction in basic capacity means, it is quite literally beyond their experience. And they don't want to get it. The professional culture simply does not allow it, regarding it as a weakness to be purged.
When doctors themselves get these kind of health problems, you know what most of them actually do, once they finally accept it is actually happening to them? Shut the fuck up, and never tell their colleagues, because they know exactly what is going to happen to them if they do. They know how these patients are really viewed and treated. So they start lying their arses off, downsizing their career big time, maybe take up a different career, or even early retirement in some form if it is an option, and basically just disappear. Trust me, that happens a lot more to their own than most doctors might want to believe.
posted by Pouteria at 11:49 PM on March 21, 2023 [19 favorites]
So clearly Long Covid is a real illness which can result in physical damage to various different systems of the body.
But bed rest itself causes serious deconditioning of the body, as detailed here. For instance:
posted by TheophileEscargot at 3:19 AM on March 22, 2023 [8 favorites]
But bed rest itself causes serious deconditioning of the body, as detailed here. For instance:
A 26% decrease in V& O2max in five men after 20 days of bed rest was accompanied by a similar 26%I think people can underestimate how much the rest required to recover from an illness, causes its own ill effects. And you can't recover from the damage caused by rest, by taking more rest.
decline in cardiac output...
Thirty days of bed rest resulted in a 38% decrease in maximum blood flow to the calf...
Maximal strength of the knee flexors (-6%) and knee extensors (-19%) decreased following 30 days of bed rest...
posted by TheophileEscargot at 3:19 AM on March 22, 2023 [8 favorites]
There is a fiscal incentive for 'no such thing as long covid'. There is a similar incentive for a finding SARS-COV2 was not the product of the manipulation of man. With both findings there would be a push for compensation. And finally if the pharmaceutical firms can't make a new drug or repurpose an old drug the pharma->doctor payment cycle along with a lack of insurance coverage won't reinforce the wallet lining of the doctors.
The idea of 'no such thing as long covid' let us go look at a disease condition of the past. One that was claimed by some to be caused by chemtrails.
Some health care providers recognize the condition as a delusional infestation and treat it with antidepressants, antipsychotic drugs, cognitive behavioral therapy and counseling. Others think the symptoms are related to an infectious process in skin cells. Further study is needed.
Note the tone of the Mayo clinic. No date was noted by me on that article. But there is and result from overproduction of these filaments in response to spirochetal infection. from the ncbi site.
And here on The Blue one can read the reactions to morgellons in 2006 then 2014 along with someone have an undefined anonymous medical issue in 2017 So keep the past in mind when you see claims about long covid.
posted by rough ashlar at 4:51 AM on March 22, 2023
The idea of 'no such thing as long covid' let us go look at a disease condition of the past. One that was claimed by some to be caused by chemtrails.
Some health care providers recognize the condition as a delusional infestation and treat it with antidepressants, antipsychotic drugs, cognitive behavioral therapy and counseling. Others think the symptoms are related to an infectious process in skin cells. Further study is needed.
Note the tone of the Mayo clinic. No date was noted by me on that article. But there is and result from overproduction of these filaments in response to spirochetal infection. from the ncbi site.
And here on The Blue one can read the reactions to morgellons in 2006 then 2014 along with someone have an undefined anonymous medical issue in 2017 So keep the past in mind when you see claims about long covid.
posted by rough ashlar at 4:51 AM on March 22, 2023
Regarding the responses in the thread, I debated whether or not to comment further but I wanted to say one more thing, hopefully the last thing, and that is this:
I think too many doctors have really shitty bedside manners. Which really just translates into the fact that they may not listen well, they may process information in a way that is bizarre, they may offer insights or advice that is just absurd or misguided or tone deaf or obtuse or dismissive.
I work in a big clinic and I like to be super busy which means that on any given day I might see five or 10 patients that are not even from my own practice who need urgent access for one thing or another. What I observe constantly is that they are not only grateful to be worked in, even just for a short appointment, but after 30 years my mannerisms are fairly informal and candid and relatable I think and generally patients appreciate that. Which just makes me realize that a lot of patients probably get terrible interactions with their doctor. I'm sorry about that, genuinely, because everybody needs to be heard. And it's clear when metafilter discusses medical issues that a lot of people have been treated really badly. So when the sting of some of the more negative comments wears off what I'm going to take away is to try to do better every day. Thank you.
posted by docpops at 9:17 AM on March 22, 2023 [27 favorites]
I think too many doctors have really shitty bedside manners. Which really just translates into the fact that they may not listen well, they may process information in a way that is bizarre, they may offer insights or advice that is just absurd or misguided or tone deaf or obtuse or dismissive.
I work in a big clinic and I like to be super busy which means that on any given day I might see five or 10 patients that are not even from my own practice who need urgent access for one thing or another. What I observe constantly is that they are not only grateful to be worked in, even just for a short appointment, but after 30 years my mannerisms are fairly informal and candid and relatable I think and generally patients appreciate that. Which just makes me realize that a lot of patients probably get terrible interactions with their doctor. I'm sorry about that, genuinely, because everybody needs to be heard. And it's clear when metafilter discusses medical issues that a lot of people have been treated really badly. So when the sting of some of the more negative comments wears off what I'm going to take away is to try to do better every day. Thank you.
posted by docpops at 9:17 AM on March 22, 2023 [27 favorites]
Docpops - I was honestly stewing last night over my decision to engage with you after years of seeing how little empathy you have shown towards patients over the years on metafilter.
I can honestly say that this is the most astounding and welcome comment I have maybe ever read here. Thank you for hearing and reflecting. It really does actually give me hope for the medical profession, and I appreciate your taking the time to say this.
posted by Bottlecap at 11:45 AM on March 22, 2023 [2 favorites]
I can honestly say that this is the most astounding and welcome comment I have maybe ever read here. Thank you for hearing and reflecting. It really does actually give me hope for the medical profession, and I appreciate your taking the time to say this.
posted by Bottlecap at 11:45 AM on March 22, 2023 [2 favorites]
Yeah, most people who have any kind of chronic illness have plenty of horror stories about interactions with doctors going back decades. I was diagnosed with POTS as a teenager by a neurologist and put on amitriptyline. It seemed to help, but a few years later I was getting more symptoms again so asked my doctor if we might need to increase the dose or change meds. She said, "Have you considered that your problems are actually because you're depressed? Because you completed a survey at sixteen saying you had symptoms of anxiety and depression."
"Well, I did at the time because I was living in an abusive household. I'm no longer living there and have not had depressive symptoms in about a year."
"All of my patients with your condition are depressed. And if you're depressed, this medication won't help you."
"But... the meds did help, they just don't seem to be as effective anymore. Also, amitriptyline is an antidepressant...?"
"You need to get tested for depression before I'll change anything."
[later]
"Okay, I got a full mental health assessment and they said I'm not depressed. It was expensive but I can concretely say my problems are not because of anxiety or depression. Can we talk about adjusting my meds?"
"Well, you're 18 now and I'm a pediatric neurologist, so you need to find a different doctor."
I have plenty more stories like that, and so does every chronically ill person I know. I think it can be easy for doctors to assume clients who complain just aren't listening to their doctors, when even insanely compliant patients get treated this way. I've repeatedly had doctors comment (sometimes to my face, sometimes when they aren't quite out of earshot) about how I'm a "cut above the rest" patient, articulate and smart and excellent at following doctor's directions. And yet I still get this treatment--less than some of my friends who aren't as good at following complex treatment regimes or articulating their concerns, but even being The Perfect Patient I can't avoid it.
We have no way of knowing what your practice looks like--whether you are the doctor who listens and patiently explains how psychological factors can affect physical health (because boy howdy can they! Read Why Zebras Don't Get Ulcers if you want to be stressed out about how bad your stress is affecting your body!), or if you're the one using it as a cudgel to dismiss people. I think, in general, most people have experienced more of the latter than the former. I'm not sure what the training for doctors working with adults is like, but I know that the pediatricians at our local (highly respected) medical college receive exactly two hours of mental health training. I know this because my grad school advisor is the one to provide it and she has explicitly been told this is the only training they get in mental health in their entire education.
And oh boy, is a little knowledge a dangerous thing, because it's so easy to misapply with confidence. The power of the brain is amazing but frankly most medical doctors do not have the training to assess how any one individual's brain is contributing to their issues, and they need way more humility about that than I tend to see. I don't blame any patient seeing a doctor saying "well, maybe it's psychological/behavioral" and bristling, because that's misused so, so often.
I appreciate your willingness to hear what patients have to say on this topic, because so many have had horrible experiences. And it's harder to express that candid and relatable nature across the internet, so you don't have people's trust when you talk about a contentious issue that has caused a lot of people harm. That's where the pushback is coming from; hopefully that context is helpful.
posted by brook horse at 12:24 PM on March 22, 2023 [11 favorites]
"Well, I did at the time because I was living in an abusive household. I'm no longer living there and have not had depressive symptoms in about a year."
"All of my patients with your condition are depressed. And if you're depressed, this medication won't help you."
"But... the meds did help, they just don't seem to be as effective anymore. Also, amitriptyline is an antidepressant...?"
"You need to get tested for depression before I'll change anything."
[later]
"Okay, I got a full mental health assessment and they said I'm not depressed. It was expensive but I can concretely say my problems are not because of anxiety or depression. Can we talk about adjusting my meds?"
"Well, you're 18 now and I'm a pediatric neurologist, so you need to find a different doctor."
I have plenty more stories like that, and so does every chronically ill person I know. I think it can be easy for doctors to assume clients who complain just aren't listening to their doctors, when even insanely compliant patients get treated this way. I've repeatedly had doctors comment (sometimes to my face, sometimes when they aren't quite out of earshot) about how I'm a "cut above the rest" patient, articulate and smart and excellent at following doctor's directions. And yet I still get this treatment--less than some of my friends who aren't as good at following complex treatment regimes or articulating their concerns, but even being The Perfect Patient I can't avoid it.
We have no way of knowing what your practice looks like--whether you are the doctor who listens and patiently explains how psychological factors can affect physical health (because boy howdy can they! Read Why Zebras Don't Get Ulcers if you want to be stressed out about how bad your stress is affecting your body!), or if you're the one using it as a cudgel to dismiss people. I think, in general, most people have experienced more of the latter than the former. I'm not sure what the training for doctors working with adults is like, but I know that the pediatricians at our local (highly respected) medical college receive exactly two hours of mental health training. I know this because my grad school advisor is the one to provide it and she has explicitly been told this is the only training they get in mental health in their entire education.
And oh boy, is a little knowledge a dangerous thing, because it's so easy to misapply with confidence. The power of the brain is amazing but frankly most medical doctors do not have the training to assess how any one individual's brain is contributing to their issues, and they need way more humility about that than I tend to see. I don't blame any patient seeing a doctor saying "well, maybe it's psychological/behavioral" and bristling, because that's misused so, so often.
I appreciate your willingness to hear what patients have to say on this topic, because so many have had horrible experiences. And it's harder to express that candid and relatable nature across the internet, so you don't have people's trust when you talk about a contentious issue that has caused a lot of people harm. That's where the pushback is coming from; hopefully that context is helpful.
posted by brook horse at 12:24 PM on March 22, 2023 [11 favorites]
Docpops, I massively appreciate your contributions to this thread and others. It's incredibly valuable to have you here.
posted by TheophileEscargot at 1:04 PM on March 22, 2023 [9 favorites]
posted by TheophileEscargot at 1:04 PM on March 22, 2023 [9 favorites]
I have a couple of chronic conditions that aren't always handled well by clinicians - to put it mildly. One reason why "are you sure your symptoms aren't just depression" can sound dismissive is because mental health problems are ALSO frequently handled poorly and minimised. In that context it's hard not to hear the question as a brush-off.
To be honest, my post covid problems have been an anomoly in this regard, because doctors have generally been sympathetic, and apologetic about the impact of limited resources on my care. I'm in the UK and when I was referred to neuro the waiting list was two years long, hence the delay to my diagnosis. But whenever I've finally got access to a doctor, they've taken me seriously. The scepticism I've encountered is in media, on social media, and sometimes among acquaintances - not in medical appointments.
posted by Ballad of Peckham Rye at 3:46 PM on March 22, 2023 [1 favorite]
To be honest, my post covid problems have been an anomoly in this regard, because doctors have generally been sympathetic, and apologetic about the impact of limited resources on my care. I'm in the UK and when I was referred to neuro the waiting list was two years long, hence the delay to my diagnosis. But whenever I've finally got access to a doctor, they've taken me seriously. The scepticism I've encountered is in media, on social media, and sometimes among acquaintances - not in medical appointments.
posted by Ballad of Peckham Rye at 3:46 PM on March 22, 2023 [1 favorite]
Many years ago my spouse, who works in a medicine adjacent field, brought home What Doctors Feel by Danielle Ofri as a free bit of workplace swag. Early in the book Ofri tells an anecdote about the ways doctors respond emotionally to patients they feel they can’t help. These patients represent a threat to the self image of medicine. There’s a need to distance oneself, to blame the patient so that the self remains untouched. That’s my memory of this story.
Once I saw a little bit into how medical education works, I got another angle on this same thing — from the outside the culture of academic medicine is intensely ugly, and this is where doctors train. I work in a med school now and every year they make us pinky swear that if we see anyone behaving disrespectfully to anyone else we’ll report it. I’m gonna venture a guess that normal workplace cultures do not have occasion to worry about this. As an experiment I actually tried to report some minor misogyny this year and was told I was being too sensitive and couldn’t take a joke. Yep, that’s exactly what I expected, not gonna lie.
So you have bright people who sacrificed a lot to get into med school and residency, were perhaps put through an emotional meat grinder there and made to feel inferior for any results less than perfection, and after 6-10 years of this you send them out into the normal world with people who have disabilities and chronic illnesses, things that can’t be fixed. It’s no wonder they don’t as a class handle this very well. The real mystery is how anyone comes out of this process acting remotely human at all.
posted by eirias at 8:04 PM on March 22, 2023 [8 favorites]
Once I saw a little bit into how medical education works, I got another angle on this same thing — from the outside the culture of academic medicine is intensely ugly, and this is where doctors train. I work in a med school now and every year they make us pinky swear that if we see anyone behaving disrespectfully to anyone else we’ll report it. I’m gonna venture a guess that normal workplace cultures do not have occasion to worry about this. As an experiment I actually tried to report some minor misogyny this year and was told I was being too sensitive and couldn’t take a joke. Yep, that’s exactly what I expected, not gonna lie.
So you have bright people who sacrificed a lot to get into med school and residency, were perhaps put through an emotional meat grinder there and made to feel inferior for any results less than perfection, and after 6-10 years of this you send them out into the normal world with people who have disabilities and chronic illnesses, things that can’t be fixed. It’s no wonder they don’t as a class handle this very well. The real mystery is how anyone comes out of this process acting remotely human at all.
posted by eirias at 8:04 PM on March 22, 2023 [8 favorites]
I’m gonna venture a guess that normal workplace cultures do not have occasion to worry about this.
I think that happens literally everywhere, actually. Most people learn, as you did, not to report it because at best nothing happens and at worst, you are the only one penalized for speaking up.
posted by jenfullmoon at 4:41 AM on March 23, 2023
I think that happens literally everywhere, actually. Most people learn, as you did, not to report it because at best nothing happens and at worst, you are the only one penalized for speaking up.
posted by jenfullmoon at 4:41 AM on March 23, 2023
Do people at other jobs have to do this kind of “don’t abuse junior employees” training annually?? It certainly never came up at the other places I personally have worked. “How not to sexually harass people,” yes. Half hour web modules about how important it is not to deliberately demean young people and how only we can prevent the forest fires it creates, no.
posted by eirias at 4:45 AM on March 23, 2023
posted by eirias at 4:45 AM on March 23, 2023
docpops, thanks for that last comment. I had stopped following the thread because attitudes like the one in your previous comments are so depressing to deal with. I want to make a heartfelt request, though: Please don't think about the issue as just a matter of bedside manner. When a doctor projects psychological processes onto a patient, and minimizes issues 'for their own good'; when a doctor generalizes from their experience and fails to consider that there are always, always exceptions; when a doctor stops hearing about a problem from a patient and sees that as success, without realizing that there are other reasons the patient may stop bringing it to their attention; and most of all when a doctor lacks the humility to remember how frequently they may be wrong, and how rarely they'll ever find out about it -- it's the patients that suffer. And in this case, we're talking about patients who often have too little energy to even push back or look for better care.
I'd take a doctor who is brusque and impatient but who makes serious, thorough efforts to ask and think and research and follow up and believe me over a friendly, empathetic one who does not ultimately believe me, any day.
posted by trig at 5:50 AM on March 23, 2023 [9 favorites]
I'd take a doctor who is brusque and impatient but who makes serious, thorough efforts to ask and think and research and follow up and believe me over a friendly, empathetic one who does not ultimately believe me, any day.
posted by trig at 5:50 AM on March 23, 2023 [9 favorites]
Do people at other jobs have to do this kind of “don’t abuse junior employees” training annually??
FWIW it has depended on the job but at least two of my distinctly non-medical workplaces have had these trainings annually. They just roll 'em right in with the sexual harassment and "don't click a fucking phishing email for god's sake" trainings.
posted by We put our faith in Blast Hardcheese at 9:49 AM on March 23, 2023 [2 favorites]
FWIW it has depended on the job but at least two of my distinctly non-medical workplaces have had these trainings annually. They just roll 'em right in with the sexual harassment and "don't click a fucking phishing email for god's sake" trainings.
posted by We put our faith in Blast Hardcheese at 9:49 AM on March 23, 2023 [2 favorites]
There's been a concerted, and so far unsuccessful, attempt to get some similar "please stop abusing staff, students, and junior facult" training for faculty going in my corner of academia. But it wouldn't shock me to hear that the attitudes of senior doctors and (some) tenured faculty have some similarities in this way.
posted by Stacey at 10:11 AM on March 23, 2023 [3 favorites]
posted by Stacey at 10:11 AM on March 23, 2023 [3 favorites]
Here's a new study in JAMA that explicitly looked at long covid in 2022 and thus can address prevalence (unlike the studies cited above)!
PCC = post-covid complications as defined by the Global Burden of Disease Long COVID Collaborators. So, real long covid, not just a subgroup of neurological symptoms, like the ones above used to state "not what we thought". Nirmatrelvir = Paxlovid.
PCC = post-covid complications as defined by the Global Burden of Disease Long COVID Collaborators. So, real long covid, not just a subgroup of neurological symptoms, like the ones above used to state "not what we thought". Nirmatrelvir = Paxlovid.
The cohort included 281 793 participants; 35 717 were in the nirmatrelvir group, and 246 076 were in the control group that received no COVID-19 antiviral or antibody treatment within the first 30 days after infection.posted by Dashy at 10:25 AM on March 23, 2023 [2 favorites]
Compared with the control group, nirmatrelvir was associated with reduced risk of PCC (RR, 0.74; 95% CI, 0.72-0.77); the event rate was 12.99% (95% CI, 12.52-13.49) and 17.51% (95% CI, 17.08-17.94) at 180 days in the nirmatrelvir and the control groups, respectively. This corresponded to an ARR of 4.51% (95% CI, 4.01-4.99) at 180 days.
About that VA / JAMA study - this was a retrospective study where the two groups were not randomly assigned; instead the control group participants were selected to match the Paxlovid group, and were restricted to those "who had at least 1 risk factor for progression to severe COVID-19 illness". Presumably, the Paxlovid group had been given Paxlovid due to these same risk factors.
The rate of PCC of about 13% to 18% in these groups is likely a good estimate for these groups, but would probably not apply to groups with lower risk factors (e.g. younger, healthier).
posted by soylent00FF00 at 11:14 AM on March 23, 2023 [1 favorite]
The rate of PCC of about 13% to 18% in these groups is likely a good estimate for these groups, but would probably not apply to groups with lower risk factors (e.g. younger, healthier).
posted by soylent00FF00 at 11:14 AM on March 23, 2023 [1 favorite]
This study also threw out sick-er patients (eg GFR < 30), which mitigates the "older, sicker" -ness of VA cohorts.
Age protection from long covid seems to be limited to rather young, the under-30s. Differences above that aren't huge - certainly not enough to account for the differences in prevalence between this and the studies the Slate article is relying on, for sure.
posted by Dashy at 2:46 PM on March 23, 2023 [3 favorites]
Age protection from long covid seems to be limited to rather young, the under-30s. Differences above that aren't huge - certainly not enough to account for the differences in prevalence between this and the studies the Slate article is relying on, for sure.
posted by Dashy at 2:46 PM on March 23, 2023 [3 favorites]
Followup on the Slate article, "Long Covid Comes Into The Light”. Retraction demanded. Slate refuses:
We are over 400 journalists, researchers, clinicians, and others with expertise in Long Covid, infection associated illnesses, and disability. Many of us live with Long Covid or other infection associated illnesses.posted by Dashy at 10:14 AM on March 24, 2023 [12 favorites]
We are writing to demand a retraction of Jeff Wise's article “Long Covid Comes Into The Light” published on 3/19/23. On March 20th, your publication issued a substantial correction stating "research has identified biological changes that can occur in association with symptoms present following a COVID infection." We believe this correction and the poor way it was implemented negates the article’s conclusions about Long Covid and warrants a full retraction.
The correction undermines Wise's unfounded thesis that, "Long COVID is neither as common nor as severe as initially feared." He constructs this thesis from cherry picked data, biased sourcing, and a misinformed understanding of disability prevalence using successful SSDI claims. He also excludes the perspectives of credible experts with experience in treating, studying, or experiencing Long Covid and other associated conditions. Wise made many of these same errors and exercised his extreme bias in a November, 2022 New York Magazine article. Numerous correction letters were sent. The organization of one of his sources even accused Wise of misrepresenting information.
Over 10,000 papers have been published about the disease in high impact science journals including, Nature, Science, The New England Journal of Medicine, and Cell — journals that cannot be so easily dismissed in drawing conclusions about Long Covid. Failing to recognize that Long Covid is a valid biomedical illness in the framing of this article is unacceptable and explains the numerous errors made by Wise and Slate.
Moreover, the article originally excluded important papers like this recent review published in Nature (Davis et al.) that analyzed all the research between January 2020 and June 2022 on Long Covid. It stated that Long Covid is an incredibly severe condition that affects at least 65 million people worldwide. It concluded:
"Long COVID is a multisystemic illness encompassing ME/CFS, dysautonomia, impacts on multiple organ systems, and vascular and clotting abnormalities. It has already debilitated millions of individuals worldwide, and that number is continuing to grow. On the basis of more than 2 years of research on long COVID and decades of research on conditions such as ME/CFS, a significant proportion of individuals with long COVID may have lifelong disabilities if no action is taken."
What does "valid biomedical illness" mean?
posted by TheophileEscargot at 9:58 PM on March 24, 2023
posted by TheophileEscargot at 9:58 PM on March 24, 2023
It's cool that docpops gave a thoughtful response, but their initial many posts have put me off seeking further medical treatment. I already knew that's what doctors actually think, but it's surprising when they admit it out loud.
Saying it's a "valid biomedical illness" means that it is actually happening and not a cluster of imagined symptoms. That while not fully understood now and perhaps multiple root causes could be at the heart of it (with a person having one, some or all), it is an actual thing that is happening. If it sounds surprising that someone needs to point out that it's a real thing, keep in mind that ME/CFS patients were laughed out of doctors offices for decades. If not outright laughed at, we have opinions like "the body will return to the base state of health" which isn't the reality for a lot of ME/CFS patients.
posted by OnTheLastCastle at 9:45 AM on March 25, 2023 [2 favorites]
Saying it's a "valid biomedical illness" means that it is actually happening and not a cluster of imagined symptoms. That while not fully understood now and perhaps multiple root causes could be at the heart of it (with a person having one, some or all), it is an actual thing that is happening. If it sounds surprising that someone needs to point out that it's a real thing, keep in mind that ME/CFS patients were laughed out of doctors offices for decades. If not outright laughed at, we have opinions like "the body will return to the base state of health" which isn't the reality for a lot of ME/CFS patients.
posted by OnTheLastCastle at 9:45 AM on March 25, 2023 [2 favorites]
That retraction demand feels like critical new context for the article, could it be added with a timestamp below the fold of the OP?
posted by Chris4d at 10:24 AM on March 25, 2023 [2 favorites]
posted by Chris4d at 10:24 AM on March 25, 2023 [2 favorites]
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it's not at all to minimize the awful realities of those who are experiencing long-haul symptoms but instead to put that in its proper context outside of all the (understandably) panicked anecdata I mostly accrued over this timeline from Twitter et al
thanks for posting.
posted by Kybard at 6:46 AM on March 20, 2023 [16 favorites]