This is not going to be kind, but it's true and necessary to state. I apologize in advance.
Had you asked me in advance, I would have said that Katja in particular is likely to buy into long covid even in a world where long covid is completely psychosomatic; I think you (Katja) are probably unusually prone to looking-for-reasons-to-"believe"-things-which-are-actually-psychosomatic, without symmetrically looking-for-reasons-to-"disbelieve".
On the object level: the "Long covid probably isn't psychosomatic" section of the post looks pretty compatible with that prior. That section basically says two things:
If we take both of these as true, they point to a world where there are some real post-covid symptoms, but the large majority of reported long covid symptoms are still psychosomatic. That seems plausible, but for some reason it isn't propagated into the other sections of the post. For instance, the very first sections of this post are talking about anecdotes and survey s...
That French study is bunk.
Seropositivity is NOT AT ALL a good indicator for having had covid: https://wwwnc.cdc.gov/eid/article/27/9/21-1042_article
It is entirely possible that all those patients who believe they had COVID are right.
Some researchers believe absence of antibodies after infection is positively correlated with long covid (I don't have a source).
This study is bunk and it's harmful for adequate treatment of seronegative patients. The psychosomatic narrative has been a lazy answer stifling solid scientific research into illnesses that are not well understood yet.
I agree that I'm more likely to be concerned about in-fact-psychosomatic things than average, and on the outside view, thus probably biased in that direction in interpreting evidence. Sorry if that colors the set of considerations that seem interesting to me. (I didn't mean to claim that this was an unbiased list, sorry if I implied it. )
Some points regarding the object level:
Good points. Some responses:
Even if long covid is entirely psychosomatic, it's worth avoiding those psychosomatic effects. One way to avoid them is to debunk (potentially at the gut intuition level, which is harder to reliably do) non-psychosomatic causes of it. Another way is to avoid covid in the first place. I expect the most effective strategy will include some combination of these.
I see "psychosomatic" often used as a semantic stopsign. Once something is called "psychosomatic", people typically stop trying to figure out a way to solve the problem. I don't know of any reliable and credible ways to resolve psychosomatic issues, it's mostly meditation guys and alternative medicine quacks who even try.
If it's really true that a large amount of health-issues-in-general are psychosomatic, then that's a really huge problem which we don't have an adequate solution for! (I expect that you agree with this, I just am trying to push against the weight of the semantic stopsign that people have around this concept.)
Psychosomatic is a word that's gets often used as if that would mean that illnesses aren't real.
If you tell someone with an allergy to cats to imagine that they are stocking a cat, that can be enough to trigger the allergy symptoms. The fact that an imagined cat is good enough to trigger the allergy shows quite clearly that the allergy is partly psychosomatic as it can be triggered psychologically.
The underlying mechanisms of such an immune response are however deep. One model of long COVID is, that it's partly about autoimmune issues. Those might be as psychosomatic as the above example of cat allergy. There's a neuronal pattern that gets the body to trigger defenses in a misaligned way.
I would be surprised if the worst cases, where people can't really work and it lasts about half a year or longer, were mostly psychosomatic, or at least mostly psychosomatic in a way that's easily avoidable by just having different beliefs about long COVID. Can you really believe yourself into debilitating chronic fatigue and brain fog for half a year?
(EDITED: "a year -> "half a year", since I don't recall long COVID studies going much longer than half a year, when I looked into them, which was probably 3-6 months ago.)
I broadly agree but don't think that proves covid was the culprit. Vague shitty symptoms doctors refuse to grapple with were a problem long before covid, and if people with these symptoms can get better care by calling it long covid than leaving it open or blaming something else, they'd be stupid not to.
I appreciate you describing brain fog as psychological torment.
I think most severe/life-disrupting cases of long COVID are indistinguishable from ME/CFS. (I think it would be correct to say long COVID "causes" ME/CFS.) As someone living with ME/CFS: yes, the cognitive dysfunction is torture. And pushing to do stuff anyway just makes things worse -- this is called post-exertional malaise.
The comparison to sleep deprivation is good, but I'll note that the brain fog I regularly experience due to ME/CFS is much worse than any sleep deprivation I had ever experienced in my life beforehand.
The cognitive dysfunction itself is awful. And the way it crushes your dreams is heartbreaking. Say goodbye to your career and all your intellectual interests.
(I mean, say goodbye to your interests in general. Your physical stamina gets wrecked too. I rarely have the physical stamina to cook simple meals without post-exertional malaise.)
The social isolation stemming from the mental fatigue is threefold:
1) I feel stupid when talking to my friends, because I kind of *am* stupid now. Especially in the context of real-time conversations. My memory and processing speed is not good.
2) When I try ...
Thank you for this. I'd say prior to reading this I was around 70% that for someone recently vaccinated or boosted Omicron isn't really worth worrying about, and getting Omicron at some point might even be +EV, due to cross immunity effect. I'd say now I'm around.. 45% on this?
My sense is that EAs in general have not been in the "strict lockdown" mode, trying to do some more careful tradeoffs to allow for things like EAGs. This struck me as.. reasonable-ish at the time, (even up through delta). But if Omicron has a similar long-covid story, this suggests that the upcoming EAGs may not be a good idea in person.
For the (K) "belief in having had long COVID" (psychosomatic) French study thing see also https://www.lesswrong.com/posts/LETXrTsGAqJrcik3T/french-long-covid-study-belief-vs-infection
Frontpaging this despite the current policy to leave most Covid content on Personal Blog. Doing so because it is of interest and broad relevance to people's decisions and seems high-effort and high-quality, though note questioning of biased reasoning in the comments.
Q. Getting covid later is probably better than earlier.
As a counter consideration, vaccine effectiveness might wane quickly, and it's likely better to get COVID while better protected than while less protected. See, e.g. https://www.webmd.com/vaccines/covid-19-vaccine/news/20211227/covid-booster-protection-wanes-new-data
That being said, I'm still leaning towards avoiding COVID to avoid long COVID.
I think we should look further into this study, which seems somewhat reassuring, but I have reservations about it:
Kuodi et al., January 2022, "Association between vaccination status and reported incidence of post-acute COVID-19 symptoms in Israel: a cross-sectional study of patients tested between March 2020 and November 2021" (pdf, not yet peer-reviewed)
Their previous version understated the results, since it didn't include the uninfected. The new version does, and says (cutting out some text before and after, and emphasis added by me):
...Methods: We invited
...If half of my friends are getting covid right now, there seems to be massive value in waiting another three months before reassessing precautions, so I can see how it goes for them. While noisy, I expect to get a better sense of the distribution of outcomes among people in my reference class—and especially whether there is a macroscopic chance of really dire outcomes—from this (I think regrettable) experiment than I get from cobbling together different studies about vaguely defined symptoms among ambiguous or not-quite-relevant demographics, with various
EDIT: I forgot (or didn't know) that loss of sense of smell was less likely with Omicron, which Steven Byrnes pointed out. Seems like 12-20% (probably mostly vaccinated?) of Omicron infections vs 7-68% for previous variants (section 3.5, and I'm not sure to what extent vaccination status was considered here). I've also read that Delta was less likely to cause loss of sense of smell than earlier variants, too. If the probability of loss of sense of smell scales proportionally with other brain issues, then I'd guess Omicron is less severe than previous varia...
Thanks for such a thorough post. I'm basically trying to figure out if all this evidence holds when you have received a booster and what is the evidence for that. One question: for all the studies that you shared showing long covid negative impacts, what is the percentage of those studies that focus on getting COVID-19 (a) without vaccines (b) with "initial" vaccines (c) with a booster? Eg maybe 20% of the studies are about assessing the impact of COVID when you haven't received any vaccines, while 30% is about assessing the impact of COVID when you got the "initial" vaccines, and 50% all combined or something like that. I'd be curious about your rough assessment given that I'm sure this may take too long to do very much in detail.
One major concern I have with the tail of long COVID is its severity even if/when it does get better after a few years. If I have debilitating long COVID for 3 years and then I recover fully, how will my career be affected, and what kind of person will I be after that? I think it's reasonably likely that it would cause value drift away from effective altruism (in part because being connected to EA while feeling hopeless about my own future productivity seems psychologically painful, and if I become primarily preoccupied with my own recovery and wellbeing),...
There's a new preprint with what seem to be good controls, although based on self-report and the participation rate was low, about 1/3:
Post-acute symptoms, new onset diagnoses and health problems 6 to 12 months after SARS-CoV-2 infection: a nationwide questionnaire study in the adult Danish population
Anna Irene Vedel Sørensen, Lampros Spiliopoulos, Peter Bager, Nete Munk Nielsen, Jørgen Vinsløv Hansen, Anders Koch, Inger Kristine Meder, Steen Ethelberg, Anders Hviid
medRxiv 2022.02.27.22271328; doi: https://doi.org/10.1101/2022.02.27.22271328
...Methods W
General concerns which push me towards being much less cautious re: Long Covid than you, without getting into the specific details of studies:
G. Overall deaths from everything have been very unusually high at points in 2021, even in 15-64 age group
Yes, all-cause mortality is up. We should look at all-cause mortality because it's what we care about, but when reasoning about causes, we should break it down by causes. Not all causes are up. The insurance executive says that young people are dying of random things months after covid. I'm happy to attribute unexplained deaths to the long-term effects of covid. But first you have to check that they don't have obvious explanations. The numbers I've see...
Some other previous back of the envelope calculations (collected here):
By AdamGleave (2 shots and for Delta):
My new estimate from the calculation is 3.0 to 11.7 quality-adjusted days lost to long-term sequelae, with my all-things-considered mean at 45.
...That being said, we can still roughly estimate risk from definitely having Delta. A healthy 30yo probably has about 4x (3x-10x) less risk than before, due to vaccination, despite Delta causing higher mortality. It almost entirely comes from Long COVID. In absolute terms this is ~
Good post, but there is one important angle you missed. It is not only the question if you get Covid, but also how often you get Covid over your lifetime which may lead to cumulative damage.
According to a massive controlled study published in Nature (more readable summary here). It also looks like they are saying that this is for non-hospitalized covid patients, though the paper is confusing to me.
I am also a bit confused by what this study is trying to show. In Figure 3 it shows that a lot of things occur more frequently in patients who tested positive for COVID than in their matched controls, more in those hospitalized than that, and yet more in those admitted to the ICU. Per their methods section, this was measured by comparing the numb...
I remember from early in the pandemic studies suggesting that there's measurable long-term heart inflammation in many cases. That seems to be one plausible mechanism for long-COVID that's less subjective. Does anyone read the literature to have a more recent idea of this?
This is very interesting. I find this somewhat persuasive and am updating in the direction of being more afraid of getting covid. That being said, I think I'm still pretty far from your level of concern. I can think of three places where I think we may disagree.
The key point for me is the Value of Information of waiting some more. Many people will get Omicron soon and we will have more data.
A French study found that long covid is barely associated with having had covid according to an antibody test, yet associated with believing one has had covid (which itself is unrelated to the antibody test results).
Sorry, are you claiming that "belief in covid" is uncorrelated with antibody test results? I think:
Yet, one would still think that Having covid would be more predictive of Long covid than Believing you've had covid, since Believing and Long ought to be correlated only through their shared association with Having (common cause rather than mediation). The fact that this is not the case could indicate that people with chronic conditions come to think they Had covid (discussed at the end of the study) or that the measure of Having covid is not that good (see Siebe's comment), or that it's psychosomatic (loose usage of the term), or something(s) else.
Or that long covid is mainly caused by symptomatic covid, and Believing is a better predictor of symptomatic covid than antibody tests. Which seems pretty likely.
G. Overall deaths from everything have been very unusually high at points in 2021, even in 15-64 age group
This is wrong. Excess death increased significantly compared to the baseline only in the 45+ age groups. OWID mislead you by lumping in a bunch of age groups together.
https://www.cdc.gov/nchs/nvss/vsrr/covid19/excess_deaths.htm (select "Weekly Number of Deaths by Age")
https://www.euromomo.eu/graphs-and-maps
If everyone believed that covid was bad enough to get, it would die out in a month (possibly with terrible economic downsides for a month).
The same ...
In general, I agree with your view that one should try not to get Covid (Unless the individual costs for trying not to get it are very high, which would depend on the individual life circumstances. Since here in Germany many things are closed down anyway, for me the costs are smaller than the benefit of playing ist safe). Having said that, short remarks about two of your points:
G. Here it is interesting to look at different countries. For me the default in the tool was UK and Germany, and the differences in excess mortality for the age group 15-64 were hug...
Are there other useful things that could be funded to get more evidence?
One thing that might be possible would be funding a larger survey, maybe with a more random sample of the population.
Is there any work going on that seems at all likely to decrease risk of getting long covid conditional on getting infected, beyond current vaccines? E.g. alternative vaccines with a story to suggest why they might decrease risk, evidence of Paxlovid or other treatments decreasing risk, other targeted research programs
I hear friends reasoning, “I’ll get covid eventually and long covid probably isn’t that bad; therefore it’s not worth much to avoid it now”. Here are some things informing my sense that that’s an error:
A. Really bad anecdotes aren’t hard to find.
I asked for people’s long-covid experiences on Twitter and got more than a hundred comments mostly full of truly awful stories, almost entirely from people I don’t know at all, presumably somehow brought via the active Long Covid community.
This is a bit hard to interpret as a datum, due to the intense selection effects involved, but my main inferences are:
See this for more heavily selected but still scary anecdotes about what bad cases can look like.
B. Bad anecdotes are common enough to show up in my vicinity.
Among this cascade of terrible stories is a response from one of the handful of people from my extended network who I already knew had had covid, Oxford machine learning professor Michael Osborne. I take this as strong evidence that that level of bad experience isn’t vanishingly rare, though he has been well for the last few months, so this is only direct evidence of this kind of thing happening for about two years.
Excerpts from his account:
(Another distant relative in my generation just told me that they have long covid, but I take that as much less evidence, since I only know about them having covid at all because they saw this long covid discussion.)
C. Rates of ambiguously-maybe-quite-bad symptoms seem very high, even for people who only had mild covid
This norwegian study, n = 70k, has, for mild cases (in a sample mixing people who had covid 1-6 months prior with people who had it 11-12 months prior):
These numbers are for unvaccinated people; I’d maybe reduce them by a factor of two for being vaccinated, deferring to Matt Bell, who reasons, “A very recent report from the UK claims that full vaccination cuts the risk of lingering symptoms 28+ days after catching COVID by roughly half”.
This meta-analysis of 81 studies finds:
“Approximately 1 in 3 individuals experienced fatigue 12 or more weeks following COVID-19 diagnosis.”
“Approximately 1 in 5 individuals exhibited cognitive impairment 12 or more weeks following COVID-19 diagnosis.”
(Though I am told that lot of the studies involved might have been small-n, hospitalized, no control, so I’m not sure how they dealt with that.)
This survey suggests that among people with long covid (I think drawn from a support group), some especially undesirable symptoms are very: “88.0% of the total respondents (3310) experienced either cognitive dysfunction or memory loss (Figure 8).”
All of these symptoms come in degrees between slightly annoying and life-wrecking, making all of this hard to interpret. Maybe we can look at something more objective, like ‘can the person still do their job?’
D. It looks like a lot of people can no longer do their jobs
Some harder to interpret data about long covid sufferers in particular (where I’m not sure how many people count as that) still suggests pretty major issues:
Matt bell says that this UK data-set has ~18% of non-hospitalized long covid sufferers with “activities limited a lot.”
And looking at a survey I mentioned earlier again, people with long covid (and probably under selection to be relatively bad cases) report large losses of ability to work, and in other specific capabilities:
E. Other people’s previous back of the envelope calculations on this are not reassuring.
Matt bell:
“If you’re a 35 year old woman, and your risk of ending up with lifelong long COVID from catching COVID is 2.8%, then catching COVID would be the same, statistically speaking, as losing (50 years * 0.18 * 0.028 * 365 days/year) = ~90 days of your life.”
Scott Alexander:
“Your chance of really bad debilitating lifelong Long COVID, conditional on getting COVID, is probably somewhere between a few tenths of a percent, and a few percent.”
F. Having ‘survived’ covid looks associated with a 60% increased risk of death (after surviving covid) during the following six months
According to a massive controlled study published in Nature (more readable summary here). It also looks like they are saying that this is for non-hospitalized covid patients, though the paper is confusing to me.
I’m not sure whether to model this as some longer-than-a-few-weeks period of danger that is still done within the year (maybe 400 micromorts if done by six months), versus semi-permanently worse health (which would maybe be like aging about 8 years).
This is bad because death, but I’m maybe more alarmed by it because it supports the ‘post-covid illness is some fairly extreme body fuckage of which the fact that some people can’t think straight is merely a tip-of-the-iceberg symptom’ hypothesis over the ‘most of the story is that you lose some work time this year’ hypothesis. Both because death really suggests something wrong, and because they catalogue a lot of things wrong—from the WebMD summary: “The patients had a high rate of stroke and other nervous system ailments; mental health problems such as depression; the onset of diabetes; heart disease and other coronary problems; diarrhea and digestive disorders; kidney disease; blood clots; joint pain; hair loss; and general fatigue.”
It’s also a bad sign about what a bad time you might have during that year. I don’t think these people go gently - it seems like a repeating theme of these long covid stories is that their victims have a lot of health scares and medical investigation, and this mortality data suggests to me that they are genuinely at risk of their lives, which I think would make the experience much worse, for me at least.
G. Overall deaths from everything have been very unusually high at points in 2021, even in 15-64 age group
From Our World In Data:
For context:
H. Sounds like these things involve various damage throughout body, and my guess is that that ends up being regrettable in ways not captured in ‘hours lost to fatigue this year’
See Nature study in F. I also feel like I’ve seen this a lot, but don’t have that many examples immediately on hand. Here’s one other example, not ideal because note that these are hospitalized younger people:
My guess is that all the symptoms are a spectrum, and if the worst looks like an unbelievable amount of cognitive impairment and a pot pourri of organ dysfunctions, or death post-infection, then probably everyone gets a handful of cognitive impairment and organ dysfunction.
I. It’s easy to just think about these worst case outcomes, but there are a lot of more probable non-worst case outcomes that would still be a non-negligible bummer.
I see people mostly estimating the worst cases, but my guess is that the more probable non-worst case outcomes (e.g. lesser fatigues and brain fogs, kidney damage, arrhythmias etc), are not nothing.
J. Future unknowns
Across all diseases, how much of their disutility is obvious in the first two years? Saliently right now: we’ve had Epstein-Barr for ages and only now noticed that it apparently has a ~1/300 chance of causing MS, usually showing up between 20 and 40, long after the virus, and wreaking brutal destruction. I’m not sure whether we would realize how bad HIV was if it had appeared two years ago and lots of people had it, but nobody had had it for more than two years yet.
K. Long covid probably isn’t psychosomatic
A French study found that long covid is barely associated with having had covid according to an antibody test, yet associated with believing one has had covid (which itself is unrelated to the antibody test results).
At first I (and I think others) thought that if this wasn’t some error, then long covid was likely psychosomatic and not caused by physically having covid. But on further thought, that’s totally wrong: this pattern could be caused by beliefs causing illness, but it could also be caused by illness causing beliefs, which obviously happens all the time. That is, people’s guesses about whether they had covid are heavily influenced by their symptoms.
Imagine a population of a thousand people. A hundred of them get covid this year, and ten get long covid caused by the virus. Fifty and five of those respectively notice that they have covid at the time. Also a hundred people get other illnesses that look like long covid (other viral infections, other mental health problems, other random things). Everyone knows that a lot of people are getting covid and don’t know they have covid. The hundred people who got some other illness that looks like long covid infer that they are plausibly in the asymptomatic covid group, since they seem to have long covid. Especially the ones who got some viral illness, so were actually a bit sick at around the time they developed their chronic illness. So we end up with people who think they have long covid having less covid than the general population, even though long covid caused by the covid virus is genuinely afflicting 10% of the covid infected. Note that everyone here might have non-psychosomatic illnesses.
It seems to me that we have other data that basically rules out the possibility that long covid is imaginary (e.g. see Nature study above on laboratory abnormalities and raised death rate). Though psychosomatic illness is weird - my understanding is that it could in principle still be psychosomatic, while yielding measurable physical laboratory abnormalities, though intuitively I’d be fairly surprised to learn that the same new psychosomatic syndrome had gripped millions in the wake of a particular belief they had, and raised their risk of death by half. Maybe I’m missing something here.
L. The general discussion of what is going on with people’s brains sounds terrible
The list of different plausible routes to brain damage occurring according to Nature—some brain cells getting broken, some blood restrictions causing little strokes, some immune system attacking your own brain type issues—is one I want very little to do with. For instance:
Another sample of current discussion of the brain damage situation that I really don’t want to be a part of, this time from NPR:
M. It sounds like covid maybe persists in your body for ages?
Seems like the virus lives throughout your organs long after recovery, based on autopsies, including of mild/asymptomatic covid sufferers (summary, paper):
This seems like a bad sign for future problems.
Ok, that was ‘covid is bad, primarily due to long covid’. But aren’t we all going to get it anyway?
N. Later rounds of covid are probably bad too
This assumes that later covids are basically free, once you’ve done it once, in a way that isn’t true for e.g. crashing your car. My guess is that later bouts are less bad on average, but far from free.
In my survey, of three people with lasting problems who got covid at least twice, one got the problems with the first, one the second, and one said both contributed (though for the last person, the second was around a month ago). Not a great sample size, but seems like strong evidence that second-round long-covid isn’t unheard of.
O. It’s not 100% that you will get it.
I’d guess there’s a decent chance you’ll be able avoid it, via reasonable-to-pay costs. For instance, maybe omicron basically brings herd immunity. Maybe rapid tests get more reliable, easy, and cheap. Maybe long covid becomes a bigger concern, and people worry enough to get R0 generally below 1. Or other technologies improve: Fend really does cut covid exhalations massively and is taken up widely, or something like Novid finds a way to be taken up. (Or your path takes you to being a hermit or living in China, or we spend next year hiding in bunkers from cyborg bees, and you are glad you didn’t pay all that covid risk up front for parties that aren’t happening.)
(If we were doing exactly what we are doing so far, but with air purifiers in most buildings, would R0 would have been ¼ instead of ~1, and would it have died out? Is the problem that we are psychologically incapable of maintaining slightly more caution than needed to keep infections steady?)
Are things so predictable?
P. The likelihood of you getting it probably does depend on how bad it is
Whether you will definitely get covid depends on your—and everyone’s—assessment of how bad it would be to get. If the high end of possible long covid risks became clearly correct, probably many people wouldn’t take those costs vs. avoiding people who choose to be risky, so the options for low risk lifestyle would improve. Like, at first when people realized that it was potentially quite valuable to wash your hands after various bodily things, it would have been pretty annoying to be one of the few people trying to avoid contact with others so called ‘germs’. One might have resigned oneself to getting every disease contained in anyone’s bodily fluids. But eventually the idea of hand-washing being important has had enough traction that everyone can care a lot about other people washing their hands after using the bathroom say, and it imposes very little burden, because basically everyone has habits and infrastructure that make it easy to uphold hygiene.
If everyone believed that covid was bad enough to get, it would die out in a month (possibly with terrible economic downsides for a month). It probably isn’t that bad, but if it really is quite bad to get, and ways to avoid it exist, people will probably realize that eventually, and adjust.
Q. Getting covid later is probably better than earlier.
So far this trend seems strong: I would rather get covid now than in March 2020. I expect more of this, from better knowledge, medicine, vaccines, and availability of everything we already have.
If I expect to get covid every year for the next five years, adding one more bout now is adding one more especially bad bout in expectation.
R. Huge VOI in following behind the crowd, at a safe distance
I know many people resigning themselves to getting covid this month, and results so far suggest that a lot of them will indeed be infected.
If half of my friends are getting covid right now, there seems to be massive value in waiting another three months before reassessing precautions, so I can see how it goes for them. While noisy, I expect to get a better sense of the distribution of outcomes among people in my reference class—and especially whether there is a macroscopic chance of really dire outcomes—from this (I think regrettable) experiment than I get from cobbling together different studies about vaguely defined symptoms among ambiguous or not-quite-relevant demographics, with various guesstimated adjustments.
There also seems to be a huge amount of uncertainty about how bad long covid is. I and my friends have various intuitions and guesses about where assorted factors of two push in this direction or that, and I doubt any of us should be super confident that we are the one with the right intuitions and guesses.
I think waiting out this spike looks like the right move from a VOI perspective even if your own judgments come out in favor of long covid being probably fine. As long as you are decently uncertain—which it seems to me that you probably should be—there is a lot of information coming in (at least if you are someone in my social circles, but probably a lot of social circles are coming to have a lot more people with covid this month).