Hi Dr. Faust, I’m a recent subscriber but big fan of your Substack. I first came across your work on The House of Pod. I would love it if you could do an article on the most up to date estimate of the risk of long COVID per infection. This is something I deeply struggle with as a 26 year old who is trying to manage both staying healthy and living my life (work, intimate relationships, friends). Despite being fairly cautious and masking much more than the average person, I’ve now had 4 infections, though all with extremely mild symptoms, even borderline asymptomatic, and no apparent long term issues. The last three (all in 2024) came from exposures from family, colleagues, and my SO. I’ve also had 8 total COVID vaccines.
Overall, I’m finding it very difficult to figure out who I can trust in regards to the risk of long COVID. On one hand, you have absolute COVID minimizers who dismiss it as just a cold, but on the other hand, you have the ZeroCovid community who say that we all have long COVID and we just don’t know it, that COVID is HIV, and that we’re all going to get cancer/heart attacks/strokes and drop dead if we get infected. While some of these people are doctors or scientist (some in relevant fields and some not), many are not, but they simplify, attempt to interpret, and amplify studies on the internet. I know I don’t have the qualifications of read and interpret these studies, so I tend to lean into the fear that they project, for better or for worse. Even highly qualified people such as Dr. Al-Aly tend to put the estimate at less than 10% of infections result in long covid. It’s also frustrating seeing many people my age continue on with their lives as though covid doesn’t exist.
I think there are many others out there who are similarly confused by the magnitude of information that is out there, while also trying to navigate the complexities of life. I would really appreciate it if you could share your thoughts.
All the best, and thank you so much for the work you do!
Hello there. Thank you for your comment. I completely understand your frustration on the Long Covid topic. The research in this area is a mess, in large part because the counterfactual is really hard to measure. That is, if you take 100 people who had Covid (study group) and compare them to 100 that did not (a control group), it is likely that some of the people in the control group actually got Covid but did not even realize it. So you end up with the study group being enriched for people whose Covid was bad enough that they sought care (this would increase the rate of bad outcomes) and the control group actually being a bit higher risk than they realize.
The only way to study this today would be to try to assemble a cohort of people with similar immune histories (for example, people of the same age and risks and, say, who have had the same number of infections and similar vaccine histories, including timing; hard to find!) and follow them for 1-2 years and see what happens. But you'd further have to randomize to account for more doses and other interventions because if some of the cohort gets another dose of the vaccine (or takes Paxlovid or something), it might or might not change the risk. All to say, estimating the per-infection risk of LC is extremely difficult.
It also depends on your definition. Some people have symptoms for 90 days and that is LC. But if they abate and things return to normal, I would not count that as an emergency worth reorganizing our lives around preventing (albeit, I would not want it to happen to me!) But if someone has symptoms for a year that really debilitates them, then it's a difficult calculation. So there's LC and there's LC, if that makes sense.
Personally, I think in the post-vaccine post-infection era (i.e. everyone has had one or more infections), the risk of really bad LC is substantially lower than the numbers we see in the literature (for the reasons above).
This is also informed by my general impression of the community, as well. Each of us knows a few hundred people reasonably well, most of whom have had Covid. In my life, I might know 300 people well enough to notice or know if any of them have LC (which some may). If 30 people are home for a year debilitated, I certainly am not aware of that. It may not even be 3 of them. (I can't think of one, but I may be forgetting?) That does not mean that there are not, say, 30 people with LC symptoms for a couple of months. That's quite possible, and we'd never know (people do hide this stuff, as is their right to do so). But objectively, as an example, every single one of the ER residents and faculty in my program has had Covid once or more times. This is 100 front line workers with tons of exposures. I am not aware of a single person with debilitating LC symptoms that lasted long enough to affect them in ways that are observable from the outside. Again, there could be a few that I am simply unaware of AND we can't know what they are feeling on the inside. But if there were 10, 20, or 30 of them who were so sick from LC that they could not work (or even as well as in the past), this would certainly be noticeable.
I think one of the reasons people downplay the LC risk is that their lived experience (what I just described) might be similar to mine and contradicts the medical literature where 10-30% of people are said to have LC. People see this, and they resolve the dissonance by concluding that the medical literature must be bullshit. Which is not really the right conclusion. The medical literature, as I read it, says that LC causes problems for some people (albeit, much worse in pre-vaccine pre-immune era). How many? Hard to say. If the real rate of serious LC is as low as 1 in 500 that would still be hundreds of thousands of Americans...a massive problem, despite not being millions of people.
Thank you so much for this very detailed response! I really appreciate you taking the time from your very busy day. I also find this stuff fascinating, and it’s part of the reason I’ve decided to change careers and go back to school to be an RN. I want to work in emergency medicine as well!
If you have time, I’m curious as to what your thoughts are on the risks of heart attacks, strokes, and clotting issues in the post-infection/post-vaccine era?
Thanks for asking. CDC says everyone 75+ should get the vaccine and people 60+ with extra risks should too. Great question. If I'd make the person 59, that would've been cleaner :)
Thanks for the updates and extra personal commitment to data and assessing it. I and my husband are still "NOVIDS" as far as COVID goes, thankfully. With almost 0 B cells due to MS drugs like Ocrevus that literally elongate my life, and CVID (Common Variable Immune Deficiency), and weakened diaphragm from MS for me, it's a scary world. Up on our COVID, Pneumovac, flu, and RSV vaxes, but strapping on our seatbelts as we face the Trump Health Cabinet heads of talk show hosts, snake oil salesmen, anti-science and anti vaxers. Many like Dr. Jay Bhattacharya, Trump nominee for National Institutes of Health, and wrote the Great Barrigton Declaration in which they support no vaccines for COVID and sequestering people like me in nursing homes while the rest of the population depends on herd immunity scare the crap out of me. It didn't work very well for Sweden or Holyoke's Soldiers Home where there were high death levels. Hang on...
I keep Benjy's dashboard in the "Notes" section of my iPhone-- it is so helpful when trying to assess the current community risk levels, especially if traveling. I find the wastewater information especially useful. Is there a key to the colors used on the charts? Some of them seem not to have color-coded keys, so I am guessing . . . . Thanks.
Hi Dr. Faust, I’m a recent subscriber but big fan of your Substack. I first came across your work on The House of Pod. I would love it if you could do an article on the most up to date estimate of the risk of long COVID per infection. This is something I deeply struggle with as a 26 year old who is trying to manage both staying healthy and living my life (work, intimate relationships, friends). Despite being fairly cautious and masking much more than the average person, I’ve now had 4 infections, though all with extremely mild symptoms, even borderline asymptomatic, and no apparent long term issues. The last three (all in 2024) came from exposures from family, colleagues, and my SO. I’ve also had 8 total COVID vaccines.
Overall, I’m finding it very difficult to figure out who I can trust in regards to the risk of long COVID. On one hand, you have absolute COVID minimizers who dismiss it as just a cold, but on the other hand, you have the ZeroCovid community who say that we all have long COVID and we just don’t know it, that COVID is HIV, and that we’re all going to get cancer/heart attacks/strokes and drop dead if we get infected. While some of these people are doctors or scientist (some in relevant fields and some not), many are not, but they simplify, attempt to interpret, and amplify studies on the internet. I know I don’t have the qualifications of read and interpret these studies, so I tend to lean into the fear that they project, for better or for worse. Even highly qualified people such as Dr. Al-Aly tend to put the estimate at less than 10% of infections result in long covid. It’s also frustrating seeing many people my age continue on with their lives as though covid doesn’t exist.
I think there are many others out there who are similarly confused by the magnitude of information that is out there, while also trying to navigate the complexities of life. I would really appreciate it if you could share your thoughts.
All the best, and thank you so much for the work you do!
Hello there. Thank you for your comment. I completely understand your frustration on the Long Covid topic. The research in this area is a mess, in large part because the counterfactual is really hard to measure. That is, if you take 100 people who had Covid (study group) and compare them to 100 that did not (a control group), it is likely that some of the people in the control group actually got Covid but did not even realize it. So you end up with the study group being enriched for people whose Covid was bad enough that they sought care (this would increase the rate of bad outcomes) and the control group actually being a bit higher risk than they realize.
The only way to study this today would be to try to assemble a cohort of people with similar immune histories (for example, people of the same age and risks and, say, who have had the same number of infections and similar vaccine histories, including timing; hard to find!) and follow them for 1-2 years and see what happens. But you'd further have to randomize to account for more doses and other interventions because if some of the cohort gets another dose of the vaccine (or takes Paxlovid or something), it might or might not change the risk. All to say, estimating the per-infection risk of LC is extremely difficult.
It also depends on your definition. Some people have symptoms for 90 days and that is LC. But if they abate and things return to normal, I would not count that as an emergency worth reorganizing our lives around preventing (albeit, I would not want it to happen to me!) But if someone has symptoms for a year that really debilitates them, then it's a difficult calculation. So there's LC and there's LC, if that makes sense.
Personally, I think in the post-vaccine post-infection era (i.e. everyone has had one or more infections), the risk of really bad LC is substantially lower than the numbers we see in the literature (for the reasons above).
This is also informed by my general impression of the community, as well. Each of us knows a few hundred people reasonably well, most of whom have had Covid. In my life, I might know 300 people well enough to notice or know if any of them have LC (which some may). If 30 people are home for a year debilitated, I certainly am not aware of that. It may not even be 3 of them. (I can't think of one, but I may be forgetting?) That does not mean that there are not, say, 30 people with LC symptoms for a couple of months. That's quite possible, and we'd never know (people do hide this stuff, as is their right to do so). But objectively, as an example, every single one of the ER residents and faculty in my program has had Covid once or more times. This is 100 front line workers with tons of exposures. I am not aware of a single person with debilitating LC symptoms that lasted long enough to affect them in ways that are observable from the outside. Again, there could be a few that I am simply unaware of AND we can't know what they are feeling on the inside. But if there were 10, 20, or 30 of them who were so sick from LC that they could not work (or even as well as in the past), this would certainly be noticeable.
I think one of the reasons people downplay the LC risk is that their lived experience (what I just described) might be similar to mine and contradicts the medical literature where 10-30% of people are said to have LC. People see this, and they resolve the dissonance by concluding that the medical literature must be bullshit. Which is not really the right conclusion. The medical literature, as I read it, says that LC causes problems for some people (albeit, much worse in pre-vaccine pre-immune era). How many? Hard to say. If the real rate of serious LC is as low as 1 in 500 that would still be hundreds of thousands of Americans...a massive problem, despite not being millions of people.
Thanks for asking. Hope this helps a bit.
Thank you so much for this very detailed response! I really appreciate you taking the time from your very busy day. I also find this stuff fascinating, and it’s part of the reason I’ve decided to change careers and go back to school to be an RN. I want to work in emergency medicine as well!
If you have time, I’m curious as to what your thoughts are on the risks of heart attacks, strokes, and clotting issues in the post-infection/post-vaccine era?
Hi Jeremy,
In your RSV example above why would the 60 y.o. not be eligible for the RSV vaccine? I thought anyone 60+ was eligible.
P.S. I LOVED your AI frustration post last week. Particularly the image with the "taller" nurse. ;)
Thanks for asking. CDC says everyone 75+ should get the vaccine and people 60+ with extra risks should too. Great question. If I'd make the person 59, that would've been cleaner :)
https://www.cdc.gov/rsv/vaccines/older-adults.html?s_cid=SEM.GA:PAI:RG_AO_GA_TM_A18_RSV-FAQ-Brd:rsv%20vaccine%20approved:SEM00078&utm_id=SEM.GA:PAI:RG_AO_GA_TM_A18_RSV-FAQ-Brd:rsv%20vaccine%20approved:SEM00078&gad_source=1
Got it! Thanks for the clarification.
Thanks for the updates and extra personal commitment to data and assessing it. I and my husband are still "NOVIDS" as far as COVID goes, thankfully. With almost 0 B cells due to MS drugs like Ocrevus that literally elongate my life, and CVID (Common Variable Immune Deficiency), and weakened diaphragm from MS for me, it's a scary world. Up on our COVID, Pneumovac, flu, and RSV vaxes, but strapping on our seatbelts as we face the Trump Health Cabinet heads of talk show hosts, snake oil salesmen, anti-science and anti vaxers. Many like Dr. Jay Bhattacharya, Trump nominee for National Institutes of Health, and wrote the Great Barrigton Declaration in which they support no vaccines for COVID and sequestering people like me in nursing homes while the rest of the population depends on herd immunity scare the crap out of me. It didn't work very well for Sweden or Holyoke's Soldiers Home where there were high death levels. Hang on...
I keep Benjy's dashboard in the "Notes" section of my iPhone-- it is so helpful when trying to assess the current community risk levels, especially if traveling. I find the wastewater information especially useful. Is there a key to the colors used on the charts? Some of them seem not to have color-coded keys, so I am guessing . . . . Thanks.