Best summaries of long COVID?
January 7, 2022 1:01 AM Subscribe
I'm looking for the best info I can find on long COVID, especially in vaccinated adults, vaccinated kids, and unvaccinated young kids. I'm trying to get a sense of how much of a risk it is. The numbers I'm seeing are all over the place and I feel like I'm not getting much analysis of what's really going on with that and how likely it is that breakthrough cases will have that kind of impact. Thanks for anything you can point me to!
At Microbe.tv, there are weekly reports by Dr. Daniel Griffin. The series was originally meant for clinicians, but it has gained a general user audience. Dr. Griffin discusses latest observations on long Covid each time, sometimes just a general remark, sometimes a deep dive.
I'm not perfectly sure, but I think that main takeaway is that the long Covid symptoms are much rarer and milder when the patient is vaccinated.
posted by SemiSalt at 6:12 AM on January 7, 2022
I'm not perfectly sure, but I think that main takeaway is that the long Covid symptoms are much rarer and milder when the patient is vaccinated.
posted by SemiSalt at 6:12 AM on January 7, 2022
This is from a while ago (september), but I think it does a much better job than most things I've read of delineating what the questions are, where the uncertainties are, etc:
Long COVID: Much More Than You Wanted To Know from Astral Codex Ten
posted by ManInSuit at 7:26 AM on January 7, 2022 [2 favorites]
Long COVID: Much More Than You Wanted To Know from Astral Codex Ten
posted by ManInSuit at 7:26 AM on January 7, 2022 [2 favorites]
This recent tweet in a thread by someone involved in vaccine development (and who, based on their posts, appears to spend a lot of time keeping on top of the literature) addresses it:
"The latest Long COVID study shows a 50-80% REDUCTION in 7/10 most commonly reported symptoms 4-11 months following a SARS-CoV-2 infection in vaccinated individuals versus unvaccinated individuals. “Vaccination with at least two doses of COVID-19 vaccine was associated with a substantial decrease in reporting the most common post-acute COVID-19 symptoms. In addition to reducing the risk of acute illness, COVID-19 vaccination may have a protective effect against long COVID.”
This is the study they link to.
One challenge I've found myself in my own efforts to figure it out is what studies qualify as long-COVID ranges, and the higher numbers reported often include people who eventually get 100% better, or whose symptoms are very mild. So, I like the fact that this recent study breaks things down by symptoms.
posted by coffeecat at 7:29 AM on January 7, 2022 [1 favorite]
"The latest Long COVID study shows a 50-80% REDUCTION in 7/10 most commonly reported symptoms 4-11 months following a SARS-CoV-2 infection in vaccinated individuals versus unvaccinated individuals. “Vaccination with at least two doses of COVID-19 vaccine was associated with a substantial decrease in reporting the most common post-acute COVID-19 symptoms. In addition to reducing the risk of acute illness, COVID-19 vaccination may have a protective effect against long COVID.”
This is the study they link to.
One challenge I've found myself in my own efforts to figure it out is what studies qualify as long-COVID ranges, and the higher numbers reported often include people who eventually get 100% better, or whose symptoms are very mild. So, I like the fact that this recent study breaks things down by symptoms.
posted by coffeecat at 7:29 AM on January 7, 2022 [1 favorite]
Best answer: The data on this question really is all over the place, as you know. Some studies show 50% or more of infected people with long Covid 1-3 months later, some other studies have very different criteria and find only a few percent have long Covid or even claim that no one does. I think the best data we have is the UK Office of National Statistics survey, linked above in a slightly older version, that just directly asks a sample of people if they have long Covid. Obviously, that's prone to all kinds of error, but as the scientific literature is all over the place and no one can agree on a definition of long Covid, falling back on what people actually think about their own health makes a lot of sense. This survey data is reasonably consistent with the more middle of the road studies and meta-analyses on long Covid, which find roughly similar numbers.
In particular, I think it's worth looking at a couple specific pieces of data from the ONS survey: the number of people reporting long Covid for a year or more (now just over half a million), because I think most of us are more concerned about long term impacts than what might happen for a few months, and the number of people in that year plus group who report long Covid limits their day-to-day activities "a little" (228,000) or "a lot" (112,000). These are the more serious outcomes that I think most of us are concerned about, especially to find our activities limited a lot. For context, the population of the UK is 68 million. Up until a year ago, the number of recorded Covid cases in the UK was about 1.7 million, but the actual number of cases was significantly higher, probably very roughly in the range of 5 million. If we do that math, that gives us a rate of long Covid after a year of about 10%, of which 5% have their day-to-day activities limited a little and 2% have their day-to-day activities limited a lot. Those are rough numbers, but I think they give a reasonable idea about the prevalence of long Covid and how severe it is.
There are clearly a few different illnesses that are being lumped together as long Covid. One is post intensive care syndrome, which is something we know about already and is affecting mostly those who were intubated, mostly elderly. This is going to be a pretty small portion of those affected, because not that many people were intubated (and of course, not all of those will have PICS). Then there are those who have long-term symptoms that are localized, like loss of smell or loss of taste (which are some of the most common symptoms in the ONS data). This is obviously not something you want, but it isn't life changing for most people. There are also people who have shortness of breath, cough, sore throat, etc. It's not clear to me how much this affects people and if it typically improves over time.
What's more worrying are symptoms like fatigue, difficulty concentrating, memory loss, headache, muscle pain, trouble sleeping and so on. For many of these people, a diagnosis of ME/CFS would be appropriate. To me, this is the most concerning outcome. ME/CFS is often thought to be a post-infectious illness and while some do recover, others stay sick for years or never recover. Severity varies, but many are unable to work, unable to walk more than a short distance or are housebound or even worse in some cases. I don't think we have any solid data on how likely these kinds of outcomes are for people with long Covid, but anecdotally there are certainly a lot of people out there who are reporting exactly these kinds of things. Even if your chance of ME/CFS as an outcome is 1% or less, it is likely a more significant risk than death from Covid for healthy adults who aren't at significant risk from Covid directly. Of course, many will have multiple symptoms and these categories are overlapping.
We also know that ME/CFS does not only affect those who are older or who have health conditions; it affects many people who were previously healthy. Long Covid is most common in adults between 35-69. ME/CFS is significantly more common in women and this pattern is seen in long Covid data as well.
For children and youth, the picture is more positive. Long Covid is far less prevalent in the 2-11 age group, affecting only about 1/10 as many as adults, and about 1/5th as many for 12-16s. Children and youth, if they do report long Covid, are also less likely to report their day-to-day activity is limited by long Covid. My impression from ME/CFS data is that risk is very, very low below about age 8. A significant number of kids do have long Covid, but it is a significantly lower risk for them than for adults.
Regarding vaccination, I think there is some very weak evidence that vaccination may reduce your risk of long Covid a little, maybe by a third or half (of course, vaccination reduces your risk of long Covid because you are less likely to get Covid at all, but here we're talking about rates for those who are infected). The data on this is very sparse, with just a few studies, and mixed, with some finding no difference and others finding about a 50% reduction in risk. Essentially, we don't really know. It's possible that long Covid is less severe in vaccinated people, but we don't know either way. We do know that plenty of people with mild or even asymptomatic infections end up with long Covid, so I wouldn't assume much. Even if the risk is reduced somewhat, long Covid is still a pretty significant risk. (As an aside, the study linked above has a mix of people who were vaccinated before infection and people who were infected and then vaccinated afterwards, so it's hard to untangle exactly what that might mean.)
We also don't know, of course, if long Covid rates are any different with Omicron, though we have no particular reason to believe they would be.
Overall, I think long Covid is a significant risk for adults, vaccinated or unvaccinated. We also know that quite a few of those infected with SARS-1 had long term illness afterwards, so this shouldn't be a surprise. We've seen similar post-infectious illnesses after other infectious diseases, including the 1918 flu epidemic. Realistically, your risk of dying from Covid if you are middle-aged and relatively healthy is not very high, but your risk of long Covid is much higher. While many with long Covid have mild symptoms or recover quickly, others do not. Many of those are facing years or a lifetime of significant disability. I think this reality should push us to take stronger public health measures and on an individual level to do more to stay safe than we might otherwise. Covid does appear to cause long term illness at significantly higher rates than something like a cold or flu, so we shouldn't treat Covid as if it is a cold or flu.
posted by ssg at 9:38 AM on January 7, 2022 [17 favorites]
In particular, I think it's worth looking at a couple specific pieces of data from the ONS survey: the number of people reporting long Covid for a year or more (now just over half a million), because I think most of us are more concerned about long term impacts than what might happen for a few months, and the number of people in that year plus group who report long Covid limits their day-to-day activities "a little" (228,000) or "a lot" (112,000). These are the more serious outcomes that I think most of us are concerned about, especially to find our activities limited a lot. For context, the population of the UK is 68 million. Up until a year ago, the number of recorded Covid cases in the UK was about 1.7 million, but the actual number of cases was significantly higher, probably very roughly in the range of 5 million. If we do that math, that gives us a rate of long Covid after a year of about 10%, of which 5% have their day-to-day activities limited a little and 2% have their day-to-day activities limited a lot. Those are rough numbers, but I think they give a reasonable idea about the prevalence of long Covid and how severe it is.
There are clearly a few different illnesses that are being lumped together as long Covid. One is post intensive care syndrome, which is something we know about already and is affecting mostly those who were intubated, mostly elderly. This is going to be a pretty small portion of those affected, because not that many people were intubated (and of course, not all of those will have PICS). Then there are those who have long-term symptoms that are localized, like loss of smell or loss of taste (which are some of the most common symptoms in the ONS data). This is obviously not something you want, but it isn't life changing for most people. There are also people who have shortness of breath, cough, sore throat, etc. It's not clear to me how much this affects people and if it typically improves over time.
What's more worrying are symptoms like fatigue, difficulty concentrating, memory loss, headache, muscle pain, trouble sleeping and so on. For many of these people, a diagnosis of ME/CFS would be appropriate. To me, this is the most concerning outcome. ME/CFS is often thought to be a post-infectious illness and while some do recover, others stay sick for years or never recover. Severity varies, but many are unable to work, unable to walk more than a short distance or are housebound or even worse in some cases. I don't think we have any solid data on how likely these kinds of outcomes are for people with long Covid, but anecdotally there are certainly a lot of people out there who are reporting exactly these kinds of things. Even if your chance of ME/CFS as an outcome is 1% or less, it is likely a more significant risk than death from Covid for healthy adults who aren't at significant risk from Covid directly. Of course, many will have multiple symptoms and these categories are overlapping.
We also know that ME/CFS does not only affect those who are older or who have health conditions; it affects many people who were previously healthy. Long Covid is most common in adults between 35-69. ME/CFS is significantly more common in women and this pattern is seen in long Covid data as well.
For children and youth, the picture is more positive. Long Covid is far less prevalent in the 2-11 age group, affecting only about 1/10 as many as adults, and about 1/5th as many for 12-16s. Children and youth, if they do report long Covid, are also less likely to report their day-to-day activity is limited by long Covid. My impression from ME/CFS data is that risk is very, very low below about age 8. A significant number of kids do have long Covid, but it is a significantly lower risk for them than for adults.
Regarding vaccination, I think there is some very weak evidence that vaccination may reduce your risk of long Covid a little, maybe by a third or half (of course, vaccination reduces your risk of long Covid because you are less likely to get Covid at all, but here we're talking about rates for those who are infected). The data on this is very sparse, with just a few studies, and mixed, with some finding no difference and others finding about a 50% reduction in risk. Essentially, we don't really know. It's possible that long Covid is less severe in vaccinated people, but we don't know either way. We do know that plenty of people with mild or even asymptomatic infections end up with long Covid, so I wouldn't assume much. Even if the risk is reduced somewhat, long Covid is still a pretty significant risk. (As an aside, the study linked above has a mix of people who were vaccinated before infection and people who were infected and then vaccinated afterwards, so it's hard to untangle exactly what that might mean.)
We also don't know, of course, if long Covid rates are any different with Omicron, though we have no particular reason to believe they would be.
Overall, I think long Covid is a significant risk for adults, vaccinated or unvaccinated. We also know that quite a few of those infected with SARS-1 had long term illness afterwards, so this shouldn't be a surprise. We've seen similar post-infectious illnesses after other infectious diseases, including the 1918 flu epidemic. Realistically, your risk of dying from Covid if you are middle-aged and relatively healthy is not very high, but your risk of long Covid is much higher. While many with long Covid have mild symptoms or recover quickly, others do not. Many of those are facing years or a lifetime of significant disability. I think this reality should push us to take stronger public health measures and on an individual level to do more to stay safe than we might otherwise. Covid does appear to cause long term illness at significantly higher rates than something like a cold or flu, so we shouldn't treat Covid as if it is a cold or flu.
posted by ssg at 9:38 AM on January 7, 2022 [17 favorites]
This could be a move towards a cure for long COVID: she may have solved the mystery of long COVID-19
Here's the research paper
And here's a comment on potential treatment (on Reddit): "General anti-coagulation with a doac/lovenox would likely work. If we understand the pathophysiology better it may be possible to use more targeted anti-interleukin or cell surface antibody therapies (IE if the inflammation is caused by a stereotyped cell type or molecule)."
posted by anadem at 9:42 AM on January 7, 2022 [1 favorite]
Here's the research paper
And here's a comment on potential treatment (on Reddit): "General anti-coagulation with a doac/lovenox would likely work. If we understand the pathophysiology better it may be possible to use more targeted anti-interleukin or cell surface antibody therapies (IE if the inflammation is caused by a stereotyped cell type or molecule)."
posted by anadem at 9:42 AM on January 7, 2022 [1 favorite]
Thanks ssg. I was sure I'd copied the link for the most recent release but must have made a mistake.
posted by knapah at 3:17 PM on January 7, 2022
posted by knapah at 3:17 PM on January 7, 2022
This thread links to a range of studies. It's too early to have a clear understanding of the long-term implications of most of this, but I'm with ssg: it's really concerning. I have dysautonomia, which is a major component of long COVID....and trust me, you don't want it.
posted by equipoise at 10:21 PM on January 8, 2022
posted by equipoise at 10:21 PM on January 8, 2022
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