Thanks for this! I think you forgot something in this article though - the fact that masks, especially N95s, prevent long COVID. As someone living with long COVID for 3 years, you really, really do not want this.
Eric Topol just posted an article in Substack, entitled "COVID and Our Arteries," which discusses a new study on this subject and vascular aging. Dr. Topol is a cardiologist who put out some very valuable information on various medical subjects.
after LC, this is increasingly becoming one of my main concerns, too—the long-term stuff that won’t be immediately apparent. I still try to avoid infections as well, but it’s really difficult and disheartening when most others aren’t taking any preventive measures at all
Thank you for this. However, way more than hundreds of thousands of people have Long Covid - modeling estimates published in Nature put the number at over 400 million globally (within the US, ~24 million, including 6 million kids). Seconding other commenters in that sharing the efficacy of N95 masks for preventing infections would be hugely helpful. Recent studies have found they're 98% effective at preventing COVID, compared to current vaccines, which are 54% effective at preventing infection.
And while evidence shows that vaccinations and boosters are helpful at decreasing the risk of Long Covid, like you mentioned, data also shows the risk increasing with each infection — and so many people are getting reinfected twice or more each year, it's a really dire state of affairs. Given that researchers in JAMA Pediatrics note that Long Covid has outpaced asthma as the most common chronic condition in children within just five years, I don't think the comparisons to the likelihood of other diseases are helpful or apt. Imagine if people approached polio or measles that way? If people were getting bitten by dogs two or more times a year, that would be a large risk of needing reconstructive surgery. It's also not apt because even beyond the risk of developing Long Covid, infections dysregulate our immune systems, making us more susceptible to secondary infections. Infections also raise the risk of heart attacks, strokes, diabetes, traffic accidents, and dementia — leading causes of death, yet COVID's impact on their numbers goes unmentioned in this post. You also did not mention that as of 2024, U.S. adults aged 25-39 had the highest rates of Long Covid symptoms, closely followed by adults aged 40-54. Long Covid's prevalence is among the highest in 18-30 year olds, so singling out older adults as at greater risk is unhelpful. And, researchers have uncovered numerous biomarkers which have yet to be translated into clinical settings, I can only assume because of the widespread denial of COVID's ongoing seriousness.
I personally developed Long Covid after one infection, despite three vaccinations, and I think treating Long Covid with this kind of "the risk will never be zero" attitude is a mistake. It is a horrendous condition, and severely isolating and disabling for huge amounts of people, regardless of their health baselines. The risk of developing Long Covid *can* be zero, if people take common sense measures to avoid COVID infection, such as using N95 masks, air purifiers, ventilation, upper-room UVC light, testing, *and* vaccination. Relying only on vaccination is a huge and often irreversible gamble — and a decision that people are not just making for themselves, but for people in their community when they go unmasked, since the majority of COVID infections are spread before people feel sick. A fifth of infections are fully asymptomatic, but can still trigger new chronic conditions.
I would suggest regularly reading the r/covidlonghaulers subreddit for some insight into what people are going through. Everyone from former elite athletes to 16-year-olds have lost everything, often without any pre-existing conditions (though that shouldn't matter....). Thank you again for this post.
Thank you. As a person w ME/CFS, I'm with you on every point, and with you in hopes for treatments. Thank you for spending your energy to show up with this important info.
Thankyou. You summarize what I see in the Central Valley. 1 in 5 like the epi studies with long Covid is my rough estimate. What is unfortunate is that children are not being watched for long Covid as closely as we should. There is a lack of resource, however, anecdotally I am hearing from elementary school teachers that 30% of all grades are needing speech and learning intervention (I’ve only talked to third grade and under ). From children that are ages 2 to 3 in child care, I’m hearing from child care providers that almost 100% of the children are not at milestones for speech. One of which is my patient’s child who is just turning three. At 2 and 6 month, he was barely able to say mom and dad had gotten Covid in utero and again at two 2 months years old. His mother noticed that with the second Covid infection his speech was worse and delayed some , even with therapy. In two years the school system will have all these children and there is no mechanism to track these children and their recovery or lack of recovery.
The chance of reconstructive surgery after a dog bite actually does not seem at all comparable to the risk of developing long covid. According to the linked-to article in the post, every year, 27,000 people out of a US population of 340 million — or about 1 in 12,592 people — need such surgery every year. In contrast, the chance of getting long covid from EACH covid infection is 2-6%, or 1 in 25 people - way higher than the dog bite surgery risk! It continues to surprise me how casually we treat a disease that causes a 1 in 25 people to develop a debilitating condition with every infection (when infections are not at all rare).
agreed! The reckless attitude is astounding, especially considering how seriously people treat measles and polio (rightfully so!). A 1 in 25 risk is roughly equivalent to the risk of kids developing pneumonia from measles, which is the most common cause of measles-related death. Just like measles, COVID weakens our immune systems and makes people way more vulnerable to follow-up infections and reawakened viruses and cancers. Per the CDC, 1 child out of every 1,000 who get measles will develop encephalitis, yet everyone understands that that outcome is a tragedy that we all need to work together to prevent. ME/CFS via Long COVID can kill. MCAS via Long Covid can kill, from people having unexpected and severe anaphylaxis to formerly innocuous things, or becoming intolerant to necessary medications. POTS can kill, when people faint and hit their heads. Brain fog can kill, by people driving unsafely, not responding quickly enough to oncoming traffic, or unknowingly taking meds multiple times a day (plus a million other ways). Loss of taste and smell can kill, by people eating rancid food. With the associated loss of life and vitality, COVID deserves exactly the same careful avoidance.
If that idiot RFK, Jr is so concerned about long covid then why did he cease funding for covid vaccine research? I am so 😡. Is there any other country in which the population is doing better than we are with vaccination and long covid? I want to live there.
It’s all bait and switch, and the overall belief of this nightmare of administration believes that Covid was a hoax. They’re not going to back science that shows otherwise.
I'm very interested in long manifestations or follow on conditions after an infection. Obviously long COVID is one, but Epstein bar and MS or lupus or rumatoid arthritis is another. I believe I read that other infections are triggers for other immunological diseases. Not a scientist but I would love to understand these relationships better and of course movement toward treatment/prevention with these triggers in mind. Thanks
This list of chronic illnesses connected with viral infections is huge and growing. MS, lupus, and arthritis like you said. Also diabetes, Parkinson's, Alzheimer's, dementia, schizophrenia, various different kinds of cancer (we've known about HPV and cervical cancer for a while, but the list of viruses with likely connections to various kinds of cancer is ever-growing), mast cell activation syndrome, ME/CFS, POTS, etc. There's some interesting research on how getting the schingles vaccine lowers your risk of dementia.
Here's an interesting overview of the evidence for a causal link between herpes and Alzheimer's I stumbled across recently: https://www.mdpi.com/2076-393X/9/6/679
"The conclusions are that there is now overwhelming evidence for HSV1’s role—probably causal—in [Alzheimer's Disease], when it is present in brain of APOE-ε4 carriers, and that further investigations should be made on possible prevention of the disease by vaccination, or by prolonged antiviral treatment of HSV1 infection in APOE-ε4 carriers, before disease onset."
I suspect the more research we do, the more we're going to learn that infections are frequently causal for a huge variety of chronic health issues, and that getting infections over the course of your life is, in the sense of accumulated damage, a lot like concussions. Which is to say that while just one infection isn't too likely to cause long-term issues, the more that you get over the course of your life (including things like flu, chicken pox, etc, that we traditionally don't think of as long-term dangerous), the more inevitable the accumulation of long-term health issues becomes. These days we still mostly think of infections as there and then gone once the acute phase is over, and it seems like the reality is that every infection is damage, and it's just a question of how much of that damage has to accumulate before you see it manifest in more permanent problems.
On the bright side, this also probably opens up new treatment approaches to look at. For example, if viruses are causing a lot of long-term health problems, antivirals may turn out to be viable treatments for at least some of them. And also it means that we can likely cut down on an enormous amount of chronic illness, disability and death by culturally normalizing basic infection precautions like HEPA filters and respiratory hygiene (i.e. masking) in settings like public transit, airplanes and healthcare even when there isn't a pandemic.
Thank you. This build on what I knew. Epstein Barr is relevant to many of these diseases (my son has MS). There was movement toward an Epstein Barr vaccine, which sure should like a good idea to me. In other words rather than treating the infection with antiviras, prevent the infection from the go.
Very interesting, but based on what I learned years ago, anti-virals are not easy to come up with. The problem is that viruses live in cells, and the drug has to manage to kill the virus without killing the cells it lives in. That said, I would venture to guess that there have been great strides made in anti-viral drugs since I learned that.
Are you aware of any link between infections and *osteo* arthritis? I'm plagued with it in every joint of my body, & taking meds with awful side effects for the pain. Wondering why this is happening to me and not to others my age.
I haven't come across any discussion of it myself, but that doesn't mean there isn't one. A lot of the connections we do know about are connections we've only found recently. Doing some cursory searching, it looks like there's overlap between osteoarthritis and EDS, and I know there's a lot of overlap between EDS and a ton of other infection-associated chronic illnesses. I almost mentioned EDS in my comment above, but while I have heard some discussion about the possibility if infection-induced cases of EDS, I wanted to keep the list to things I've seen in papers.
My heart goes out to people who have EDS. Perhaps one day researchers (if Trump lets any survive his reign) will discover links among infections and many medical issues endured by people who've been tempted to give up hope of improvement.
I had long covid for over a month this summer. I do fit the criteria for higher risk for LC as specified in this post, and I want to add that I also have Epstein-Barr, which I was told was possibly reactivated by the Covid infection. I’m wondering if that could have made my symptoms last longer.
Thanks for the update. I teach and each semester I go over the latest on Covid and Long Covid because facts are important and the media does not cover this anymore. Just today I had a student email me that they would not be in class because they are out feeling like the flu and are going to get tested.
What about the metformin/Paxlovid combo that has a published study (in the context of preventing LC in obese patients)? Paxlovid is so expensive, but that treatment is the only one that seems to have any evidence, if you get infected, so when we got Covid last fall, we shelled out for it (at least the metformin was cheap). Unsure if we should go for it again.
My two bouts of Covid were very minor. I’m talking runny nose and congestion. My physician said that unless I develop more severe symptoms next time he wouldn’t even recommend Paxlovid 🤷🏼
I really encourage those interested in potential treatment to read Dr. Howard Schubiner, Nicole Sachs, Dan Buglio, Dr. John Stracks and others who are in the brain science field of mind body medicine. There are a myriad of stories of people who were bed bound from long covid symptoms, POTS, Me/CFS, and a myriad of other issues who are completely healed and healthy now. No supplements, no gimmicks, no millions of appointments, just regulating the nervous system. The brain science is pretty powerful, and I wish mainstream providers and communicators would share that more. Worst case, you waste a couple of hours reading.
People do exist who report success with programs like these but for anyone reading please keep in mind that there are also a *lot* of people who report permanent worsening of their condition as a consequence of them. Wasting a couple of hours of reading is not the worst case scenario. If you plan to try them, make sure you read the horror stories alongside the success stories so you know the risk involved.
What are the risks? Genuinely curious how calming the nervous system can make things worse. Where are you seeing “a lot” of people having negative results? I would love to read these stories as well, as I have been plugged into the community for seven years and have not seen anyone get worse long-term.
Stories about programs that describe themselves as being about brain or nervous system retraining are things I feel like I see pretty regularly in the communities I've spent time in. The Lightning Process is probably the most famous. Here's a survey by a patient group in Denmark that reports that the Lightning Process "improved the situation for 1 out of 5, made the situation worse for half the patients, and seriously worse for 1 out of 4": https://www.me-foreningen.no/wp-content/uploads/2016/09/ME-Nat-Norwegian-Survey-Abr-Eng-Ver.pdf
"Genuinely curious how calming the nervous system can make things worse."
Calming the nervous system is supposed to be what happens if the treatment works for you, isn't it? I'm talking about what happens if it doesn't. As an analogy, imagine if someone responded to concerns about GLP-1 agonists possibly causing blindness by saying "Genuinely curious how lowering your A1C causes blindness". The claim isn't that lowering your A1C causes blindness, it's that the treatment you're using to lower it might be causing blindness. It's the treatment program, not the claimed outcome, that is at issue.
Like I said, I'm not saying people shouldn't look into it if they want. I'm saying look at both the positive and negative stories before deciding.
Interesting. I have never heard of the The Lightning Process. I would argue that Dr. Sarno’s work is the most famous. I stumbled upon the idea of mind/body medicine in 2019 after I had a whole slew of diagnoses like PFD, OAD, IBS,and insert any acronym that sounds awful and scary. I spent thousands of dollars on therapies and medication and going from doctor to doctor. I would say I am 100% fine now, and when I have a flare, I don’t panic. I calm down, and I move on. In the groups I am in (and I am in several and have been for years), I have seen people with ME, CFS, fibromyalgia,, RA, POTS, lupus, long covid, and all the things get their lives back. I was about as skeptical as you could be when I first started reading, but I am such a believer now and can’t imagine that getting your nervous system out of fight or flight and into rest and repair would make anything worse. It is not pseudoscience. The brain has tremendous power over pain and symptoms. I guess maybe it doesn’t work for everyone, but I have only seen its successes.
The Norwegian survey asks about a single program (one I've actually never heard of! but it sounds like it's more popular in Europe) is based on the experiences of 166 self-selected respondents who identified as having ME. I’m not saying it’s not legitimately a question of whether those individuals did have issues with that program, but 1) there’s a survivor bias in who is responding to the survey 2) I wouldn’t say this one program is then generalizable to all programs.
I scrolled through the subreddit and I see a lot of people calling out scammy wellness coaches etc. - very justified! - but nothing about any stories about negative effects from neural retaining programs specifically. Feel free to point me to one if I’ve missed it.
Based on the programs I’m familiar with, I know there is also some encouragement to try to slowly re-engage with activities that are challenging; I suppose that if done really aggressively, it could trigger increased symptoms. But in general, I’m just not seeing how the things that they do would, as a side effect, significantly worsen someone’s symptoms. If you look at the Curable app, which is a fairly well known one, they offer four options for each activity: writing, meditation, brain retraining (this would be something like a visualization exercise or a thought exercise), or education (reading or listening to a short talk). Things that don’t seem at all strenuous to engage with. I wouldn’t want someone to be scared off from investigating any of these programs because they think there is a much higher chance they will get worse than that they will recover.
I was coming to comment this as well. I also don't understand @Star's comment that people could have permanent worsening of their condition from nervous system regulation which usually encompasses things like meditation, journaling, changing the mental lens through which you view symptoms, etc. Maybe if people are trying to very aggressively return to activity without doing nervous system work first? But if progressed appropriately, I agree that I can't imagine it being harmful and worst case, it's not as helpful as you wanted it to be.
This article was less helpful in understanding risk than I’d hoped, probably because whatever data there is lacks the detail that would help all of us here match our own health status and circumstances up to calculate our personal risk.
I’m brainstorming here: would you consider doing a round-up where various Covid experts (doctors, researchers, other epidemiologists, etc) say what they are doing to protect themselves/their families, when, and why? For example, someone studying long COVID, like Dr Iwasaki (Yale) — is she living like it’s April 2020? If so, why? What activities do other specialists feel safe engaging in?
Are any of these specialists using nasal sprays like Enovid? Not everyplace has good ventilation, and it’s not possible to mask everywhere.
If the name of the game really is avoiding infection, and thus masking most of the fall and winter (and part of the summer), for forever…well, that’s pretty unwelcome news. It would be great to have a carefree visit with the dentist.
I was frankly startled at the UK data — I underestimated the amount of serious, permanent disability.
I’d also really like to know this. I think, in general, people are reluctant to share their personal practices because of what that opens them up to on the internet. a lot of these scary studies are largely from 2020 and/or pre-vax population, so I too have trouble gauging what my risk is today as someone who keeps up with vaccines and delayed my first infection til 2025
It's jarring to me because the only place I really hear about long covid is on places like this and social media. When my friends get covid (which is rare to hear about in the first place) they appear to recover just fine. No increases in illness or weird symptoms that I am told "everyone" is having according to some people. I myself have only had detected Covid once in 2023 with no long term side effects that I can tell.
I feel that there must be some sort of clustering occurring. When I read into the covid conscious subreddits they all discuss how they are getting infected repeatedly despite masking(!), how their friends are getting long covid, how they notice people getting worse... I just don't observe any of that in my daily life and I only really started worrying about it in 2024 due to my own obsessive personality traits.
I know plenty of people who developed long covid in the first 2.5 years. Most have recovered at least 80% of the way, although if they get reinfected, some of them backslide for several months. Nobody I know seems to be having lingering symptoms of recent infections — but if they don’t mask, they’re definitely getting it 1-2x/year, even if vaccinated — some of them despite 2 vaccines a year.
But…seriously, masking at the dentist isn’t possible. I’ve had multiple serious surgeries recently, and begged my nurses to re-mask me with my N-95 as soon as my OR airway support was removed, but I still woke up in recovery with no mask in sight each time, with dozens of other unmasked patients exhaling all around me. Constant vigilance is not possible while under anesthesia.
It truly is hard to know how to proceed.
Just like we had a Swiss-cheese approach to avoiding infection, we need a new, optimized Swiss-cheese approaches that modify risk while living more normal lives. Surely we can crowd-source best practices for multiple scenarios (including “so you have Covid, again”).
Went to schedule my Covid vaccine only to be told I am not eligible as I am under 65. I have long Covid but this is not a pre existing condition listed by the CDC 🤬
I am in the UK and have been diagnosed with ME/CFS purely because I didn’t have a positive Covid test directly prior to getting sick (even though in hindsight I got the same LC symptoms six months before after having Covid, then it cleared up for a few months before coming back). I got Covid three times and got my three doses of the vaccine before getting ME. But I was very healthy and fit prior to Covid coming along so I refuse to rule out that Covid caused my ME.
Also important to note, the UK is currently shutting down long covid clinics. So I think we’ll see more people diagnosed with ME in order to get treatment (not that it adds up to much). This doesn’t seem to be a policy but I feel it will become the trend. Getting diagnosed with either chronic illness is still such a mess despite the significant number of people who have LC.
On a positive note, anyone here diagnosed with LC, it’s a good idea to look up ME/CFS info as it overlaps so much with LC.
I have always felt that the symptoms of long Covid are remarkably similar to my experience with untreated Lyme disease.
I knew I had been bit by a deer tick and that it had been adhered to my calf for a couple of days. Long story short, I could not get treatment. I was living in Oregon and actually had my doctor literally scream in my face that I could not have Lyme disease because there was no Lyme disease in Oregon. (I never had the bull's-eye rash which, as I am sure you are aware, is a symptom only in 50% of Lyme cases)
I was in bed for nearly 2 months, barely able to get up and heat up a can of soup. It took me almost a year before I could sit up and eat at the kitchen table. I could not pass a day without having one or two naps. A feeling would suddenly come over me (severe brain fog) and if I did not take a nap I felt as though I would fall flat on my face. if I went out to grocery shop, I would be knocked out for two or three days after. I lost my ability to remember long numbers. Previously I could look at a number with 20 digits and repeat it back. Now, I couldn't even remember an entire phone number. (I did mental exercises with games on my phone for years and my ability to remember numbers has improved, although not entirely)
I was retired and so was able to "listen to my body" and just rest as much as I had to. It took at least two years before I occasionally could get through a day without a nap. It did not take long to discover that even a quarter of a glass of wine would set me back a week.
It's almost 6 years now and I'm just beginning to feel somewhat normal, although that year in bed wreaked havoc on my muscle strength. Any exercise I do has to be very gradually introduced or I am wiped out.
I am convinced that the best thing for any such illness is rest!
This sounds awful and you are right, very like long covid/ME/CFS. Rest is definitely a pillar of recovery but as so many people who get it are of working age, it’s basically disabling us for years at a time.
There is a doctor Dr Lambert in Dublin who specialised in Lyme disease treatment and then pivoted to Long Covid treatment as he also felt they were similar. He’s spoke on a long Covid podcast and on YouTube interview if you want to look him up.
Thank you for this information. I will look him up.
Yes, I am very aware that I was fortunate to be able to rest. Any time I exerted myself I would see an immediate decline. Even with completely adhering to this regimen, it took nearly 2 years before I approached maybe 75% energy/normality. And I still had to be very careful not to push myself at all. To this day I am mindful of my activity and limits.
I also was very fortunate that my friends and family understood that at any moment I might need a nap.
How I'm thinking about long c0v*d: another point of view.
When you know what LC and ME/CFS look like, you might decide that any risk above zero is not acceptable. (Also, population data ≠ individual risk.)
I'm avoiding infection w sars2, a vascular neuroimmune disease with a respiratory route, because that's the only way to ensure that I don't get LC or any form of PASC, including cardiovascular, endocrine, neurological complications, etc. I continue to use the simple tool of mask use in indoor shared spaces, as well as air filtration/ventilation, monitoring CO2 as a proxy (and sars2 aerosols are less stable when CO2 is low), dining outdoors, and testing before visiting with loved ones unmasked. I limit the number of times I am not masked.
Until we have sterilizing nasal immunization, my mask is my best tool. My once or twice a year jab is the back-up plan, not the major strategy.
Let's understand the range of harm from PASC so we will believe and support people who are suffering.
This includes resources to share w your drs, because they didn't learn this stuff in med school. There's a link to a clinical care guide. Please share this important resource, and skim it to get an idea of what LC and ME/CFS look like.
I've had ME/CFS for 25 years. I can't afford to get LC, and neither can you. Data shows that a large portion of people w LC have a phenotype that resembles ME/CFS. ME has worse quality of life than MS or terminal cancer. There is no treatment, certainly no cure. Help is not on the way any time soon. There are only a handful of clinicians in the US who have expertise. Research and public health agencies in the US are being jeopardized. To this day and despite evidence, there is an absurd movement (largely in the UK) to deny ME/CFS and undermine progress. I have hope, but my realistic eyes are wide open.
These reports are a very important contribution -- thanks so much for doing this! Relative to the long term dangers of a COVID infection it might be worthwhile to examine the very large [641,704 patients] German study [Tesch et al (2023) "Incident autoimmune diseases in association with a SARS-CoV-2 infection: A matched cohort study"]. In COVID patients they report a 42% higher likelihood of acquiring an autoimmune condition compared to controls; COVID patients with a preexisting autoimmune disease had a 23% higher likelihood of being diagnosed with another autoimmune disease. I have only the non-reviewed preprint from medRxiv, but this must have been published by now. Something to consider. Thanks. RC Eaton PhD
Thanks for this! I think you forgot something in this article though - the fact that masks, especially N95s, prevent long COVID. As someone living with long COVID for 3 years, you really, really do not want this.
Eric Topol just posted an article in Substack, entitled "COVID and Our Arteries," which discusses a new study on this subject and vascular aging. Dr. Topol is a cardiologist who put out some very valuable information on various medical subjects.
Totally! It's clear that Covid infection has impact beyond long covid, one of them the arteris and possibly the brain.
after LC, this is increasingly becoming one of my main concerns, too—the long-term stuff that won’t be immediately apparent. I still try to avoid infections as well, but it’s really difficult and disheartening when most others aren’t taking any preventive measures at all
A new article reporting that scientists are rethinking what COVID does to the immune system is up at BMJ https://www.bmj.com/content/390/bmj.r1733
To be clear, this is a report, so more like a review of what is known, and is not a clinical or epidemiological study. But still interesting.
Thank you for this. However, way more than hundreds of thousands of people have Long Covid - modeling estimates published in Nature put the number at over 400 million globally (within the US, ~24 million, including 6 million kids). Seconding other commenters in that sharing the efficacy of N95 masks for preventing infections would be hugely helpful. Recent studies have found they're 98% effective at preventing COVID, compared to current vaccines, which are 54% effective at preventing infection.
And while evidence shows that vaccinations and boosters are helpful at decreasing the risk of Long Covid, like you mentioned, data also shows the risk increasing with each infection — and so many people are getting reinfected twice or more each year, it's a really dire state of affairs. Given that researchers in JAMA Pediatrics note that Long Covid has outpaced asthma as the most common chronic condition in children within just five years, I don't think the comparisons to the likelihood of other diseases are helpful or apt. Imagine if people approached polio or measles that way? If people were getting bitten by dogs two or more times a year, that would be a large risk of needing reconstructive surgery. It's also not apt because even beyond the risk of developing Long Covid, infections dysregulate our immune systems, making us more susceptible to secondary infections. Infections also raise the risk of heart attacks, strokes, diabetes, traffic accidents, and dementia — leading causes of death, yet COVID's impact on their numbers goes unmentioned in this post. You also did not mention that as of 2024, U.S. adults aged 25-39 had the highest rates of Long Covid symptoms, closely followed by adults aged 40-54. Long Covid's prevalence is among the highest in 18-30 year olds, so singling out older adults as at greater risk is unhelpful. And, researchers have uncovered numerous biomarkers which have yet to be translated into clinical settings, I can only assume because of the widespread denial of COVID's ongoing seriousness.
I personally developed Long Covid after one infection, despite three vaccinations, and I think treating Long Covid with this kind of "the risk will never be zero" attitude is a mistake. It is a horrendous condition, and severely isolating and disabling for huge amounts of people, regardless of their health baselines. The risk of developing Long Covid *can* be zero, if people take common sense measures to avoid COVID infection, such as using N95 masks, air purifiers, ventilation, upper-room UVC light, testing, *and* vaccination. Relying only on vaccination is a huge and often irreversible gamble — and a decision that people are not just making for themselves, but for people in their community when they go unmasked, since the majority of COVID infections are spread before people feel sick. A fifth of infections are fully asymptomatic, but can still trigger new chronic conditions.
I would suggest regularly reading the r/covidlonghaulers subreddit for some insight into what people are going through. Everyone from former elite athletes to 16-year-olds have lost everything, often without any pre-existing conditions (though that shouldn't matter....). Thank you again for this post.
Thank you. As a person w ME/CFS, I'm with you on every point, and with you in hopes for treatments. Thank you for spending your energy to show up with this important info.
Thankyou. You summarize what I see in the Central Valley. 1 in 5 like the epi studies with long Covid is my rough estimate. What is unfortunate is that children are not being watched for long Covid as closely as we should. There is a lack of resource, however, anecdotally I am hearing from elementary school teachers that 30% of all grades are needing speech and learning intervention (I’ve only talked to third grade and under ). From children that are ages 2 to 3 in child care, I’m hearing from child care providers that almost 100% of the children are not at milestones for speech. One of which is my patient’s child who is just turning three. At 2 and 6 month, he was barely able to say mom and dad had gotten Covid in utero and again at two 2 months years old. His mother noticed that with the second Covid infection his speech was worse and delayed some , even with therapy. In two years the school system will have all these children and there is no mechanism to track these children and their recovery or lack of recovery.
I wish there was more awareness of all you say.
Having information about the pathophysiology at the cellular/ mitochondrial level would be helpful.
Great suggestion! Will try and tackle this next time.
The chance of reconstructive surgery after a dog bite actually does not seem at all comparable to the risk of developing long covid. According to the linked-to article in the post, every year, 27,000 people out of a US population of 340 million — or about 1 in 12,592 people — need such surgery every year. In contrast, the chance of getting long covid from EACH covid infection is 2-6%, or 1 in 25 people - way higher than the dog bite surgery risk! It continues to surprise me how casually we treat a disease that causes a 1 in 25 people to develop a debilitating condition with every infection (when infections are not at all rare).
agreed! The reckless attitude is astounding, especially considering how seriously people treat measles and polio (rightfully so!). A 1 in 25 risk is roughly equivalent to the risk of kids developing pneumonia from measles, which is the most common cause of measles-related death. Just like measles, COVID weakens our immune systems and makes people way more vulnerable to follow-up infections and reawakened viruses and cancers. Per the CDC, 1 child out of every 1,000 who get measles will develop encephalitis, yet everyone understands that that outcome is a tragedy that we all need to work together to prevent. ME/CFS via Long COVID can kill. MCAS via Long Covid can kill, from people having unexpected and severe anaphylaxis to formerly innocuous things, or becoming intolerant to necessary medications. POTS can kill, when people faint and hit their heads. Brain fog can kill, by people driving unsafely, not responding quickly enough to oncoming traffic, or unknowingly taking meds multiple times a day (plus a million other ways). Loss of taste and smell can kill, by people eating rancid food. With the associated loss of life and vitality, COVID deserves exactly the same careful avoidance.
If that idiot RFK, Jr is so concerned about long covid then why did he cease funding for covid vaccine research? I am so 😡. Is there any other country in which the population is doing better than we are with vaccination and long covid? I want to live there.
I've stopped trying to make it make sense for a while.
Me too!
It’s all bait and switch, and the overall belief of this nightmare of administration believes that Covid was a hoax. They’re not going to back science that shows otherwise.
I'm very interested in long manifestations or follow on conditions after an infection. Obviously long COVID is one, but Epstein bar and MS or lupus or rumatoid arthritis is another. I believe I read that other infections are triggers for other immunological diseases. Not a scientist but I would love to understand these relationships better and of course movement toward treatment/prevention with these triggers in mind. Thanks
This list of chronic illnesses connected with viral infections is huge and growing. MS, lupus, and arthritis like you said. Also diabetes, Parkinson's, Alzheimer's, dementia, schizophrenia, various different kinds of cancer (we've known about HPV and cervical cancer for a while, but the list of viruses with likely connections to various kinds of cancer is ever-growing), mast cell activation syndrome, ME/CFS, POTS, etc. There's some interesting research on how getting the schingles vaccine lowers your risk of dementia.
Here's an interesting overview of the evidence for a causal link between herpes and Alzheimer's I stumbled across recently: https://www.mdpi.com/2076-393X/9/6/679
"The conclusions are that there is now overwhelming evidence for HSV1’s role—probably causal—in [Alzheimer's Disease], when it is present in brain of APOE-ε4 carriers, and that further investigations should be made on possible prevention of the disease by vaccination, or by prolonged antiviral treatment of HSV1 infection in APOE-ε4 carriers, before disease onset."
I suspect the more research we do, the more we're going to learn that infections are frequently causal for a huge variety of chronic health issues, and that getting infections over the course of your life is, in the sense of accumulated damage, a lot like concussions. Which is to say that while just one infection isn't too likely to cause long-term issues, the more that you get over the course of your life (including things like flu, chicken pox, etc, that we traditionally don't think of as long-term dangerous), the more inevitable the accumulation of long-term health issues becomes. These days we still mostly think of infections as there and then gone once the acute phase is over, and it seems like the reality is that every infection is damage, and it's just a question of how much of that damage has to accumulate before you see it manifest in more permanent problems.
On the bright side, this also probably opens up new treatment approaches to look at. For example, if viruses are causing a lot of long-term health problems, antivirals may turn out to be viable treatments for at least some of them. And also it means that we can likely cut down on an enormous amount of chronic illness, disability and death by culturally normalizing basic infection precautions like HEPA filters and respiratory hygiene (i.e. masking) in settings like public transit, airplanes and healthcare even when there isn't a pandemic.
Thank you. This build on what I knew. Epstein Barr is relevant to many of these diseases (my son has MS). There was movement toward an Epstein Barr vaccine, which sure should like a good idea to me. In other words rather than treating the infection with antiviras, prevent the infection from the go.
Very interesting, but based on what I learned years ago, anti-virals are not easy to come up with. The problem is that viruses live in cells, and the drug has to manage to kill the virus without killing the cells it lives in. That said, I would venture to guess that there have been great strides made in anti-viral drugs since I learned that.
Are you aware of any link between infections and *osteo* arthritis? I'm plagued with it in every joint of my body, & taking meds with awful side effects for the pain. Wondering why this is happening to me and not to others my age.
I haven't come across any discussion of it myself, but that doesn't mean there isn't one. A lot of the connections we do know about are connections we've only found recently. Doing some cursory searching, it looks like there's overlap between osteoarthritis and EDS, and I know there's a lot of overlap between EDS and a ton of other infection-associated chronic illnesses. I almost mentioned EDS in my comment above, but while I have heard some discussion about the possibility if infection-induced cases of EDS, I wanted to keep the list to things I've seen in papers.
My heart goes out to people who have EDS. Perhaps one day researchers (if Trump lets any survive his reign) will discover links among infections and many medical issues endured by people who've been tempted to give up hope of improvement.
I had long covid for over a month this summer. I do fit the criteria for higher risk for LC as specified in this post, and I want to add that I also have Epstein-Barr, which I was told was possibly reactivated by the Covid infection. I’m wondering if that could have made my symptoms last longer.
Thanks for the update. I teach and each semester I go over the latest on Covid and Long Covid because facts are important and the media does not cover this anymore. Just today I had a student email me that they would not be in class because they are out feeling like the flu and are going to get tested.
Can you comment on the value (or not) of taking Paxlovid, as it relates to long COVID risk?
The evidence has been really mixed and, unfortuanately, at the dose that is currently given it doesn't look like it does much. This has a section on the latest: https://yourlocalepidemiologist.substack.com/p/long-covid-research-roundup-37c?utm_source=publication-search
VERY helpful - thank you so much! We are forever indebted to your work!
What about the metformin/Paxlovid combo that has a published study (in the context of preventing LC in obese patients)? Paxlovid is so expensive, but that treatment is the only one that seems to have any evidence, if you get infected, so when we got Covid last fall, we shelled out for it (at least the metformin was cheap). Unsure if we should go for it again.
My two bouts of Covid were very minor. I’m talking runny nose and congestion. My physician said that unless I develop more severe symptoms next time he wouldn’t even recommend Paxlovid 🤷🏼
I really encourage those interested in potential treatment to read Dr. Howard Schubiner, Nicole Sachs, Dan Buglio, Dr. John Stracks and others who are in the brain science field of mind body medicine. There are a myriad of stories of people who were bed bound from long covid symptoms, POTS, Me/CFS, and a myriad of other issues who are completely healed and healthy now. No supplements, no gimmicks, no millions of appointments, just regulating the nervous system. The brain science is pretty powerful, and I wish mainstream providers and communicators would share that more. Worst case, you waste a couple of hours reading.
People do exist who report success with programs like these but for anyone reading please keep in mind that there are also a *lot* of people who report permanent worsening of their condition as a consequence of them. Wasting a couple of hours of reading is not the worst case scenario. If you plan to try them, make sure you read the horror stories alongside the success stories so you know the risk involved.
What are the risks? Genuinely curious how calming the nervous system can make things worse. Where are you seeing “a lot” of people having negative results? I would love to read these stories as well, as I have been plugged into the community for seven years and have not seen anyone get worse long-term.
Stories about programs that describe themselves as being about brain or nervous system retraining are things I feel like I see pretty regularly in the communities I've spent time in. The Lightning Process is probably the most famous. Here's a survey by a patient group in Denmark that reports that the Lightning Process "improved the situation for 1 out of 5, made the situation worse for half the patients, and seriously worse for 1 out of 4": https://www.me-foreningen.no/wp-content/uploads/2016/09/ME-Nat-Norwegian-Survey-Abr-Eng-Ver.pdf
There's a new-ish subreddit community for people who have had bad experiences with similar programs to talk about them: https://www.reddit.com/r/loveandlightvictims/
"Genuinely curious how calming the nervous system can make things worse."
Calming the nervous system is supposed to be what happens if the treatment works for you, isn't it? I'm talking about what happens if it doesn't. As an analogy, imagine if someone responded to concerns about GLP-1 agonists possibly causing blindness by saying "Genuinely curious how lowering your A1C causes blindness". The claim isn't that lowering your A1C causes blindness, it's that the treatment you're using to lower it might be causing blindness. It's the treatment program, not the claimed outcome, that is at issue.
Like I said, I'm not saying people shouldn't look into it if they want. I'm saying look at both the positive and negative stories before deciding.
Interesting. I have never heard of the The Lightning Process. I would argue that Dr. Sarno’s work is the most famous. I stumbled upon the idea of mind/body medicine in 2019 after I had a whole slew of diagnoses like PFD, OAD, IBS,and insert any acronym that sounds awful and scary. I spent thousands of dollars on therapies and medication and going from doctor to doctor. I would say I am 100% fine now, and when I have a flare, I don’t panic. I calm down, and I move on. In the groups I am in (and I am in several and have been for years), I have seen people with ME, CFS, fibromyalgia,, RA, POTS, lupus, long covid, and all the things get their lives back. I was about as skeptical as you could be when I first started reading, but I am such a believer now and can’t imagine that getting your nervous system out of fight or flight and into rest and repair would make anything worse. It is not pseudoscience. The brain has tremendous power over pain and symptoms. I guess maybe it doesn’t work for everyone, but I have only seen its successes.
Thanks for the patient explanation. Survivor bias is blinding!!
See my comment for more context re: survivor bias - I would say there is also significant survivor bias in the survey Star is citing.
I wanted to give some context for this comment.
The Norwegian survey asks about a single program (one I've actually never heard of! but it sounds like it's more popular in Europe) is based on the experiences of 166 self-selected respondents who identified as having ME. I’m not saying it’s not legitimately a question of whether those individuals did have issues with that program, but 1) there’s a survivor bias in who is responding to the survey 2) I wouldn’t say this one program is then generalizable to all programs.
I scrolled through the subreddit and I see a lot of people calling out scammy wellness coaches etc. - very justified! - but nothing about any stories about negative effects from neural retaining programs specifically. Feel free to point me to one if I’ve missed it.
Based on the programs I’m familiar with, I know there is also some encouragement to try to slowly re-engage with activities that are challenging; I suppose that if done really aggressively, it could trigger increased symptoms. But in general, I’m just not seeing how the things that they do would, as a side effect, significantly worsen someone’s symptoms. If you look at the Curable app, which is a fairly well known one, they offer four options for each activity: writing, meditation, brain retraining (this would be something like a visualization exercise or a thought exercise), or education (reading or listening to a short talk). Things that don’t seem at all strenuous to engage with. I wouldn’t want someone to be scared off from investigating any of these programs because they think there is a much higher chance they will get worse than that they will recover.
I was coming to comment this as well. I also don't understand @Star's comment that people could have permanent worsening of their condition from nervous system regulation which usually encompasses things like meditation, journaling, changing the mental lens through which you view symptoms, etc. Maybe if people are trying to very aggressively return to activity without doing nervous system work first? But if progressed appropriately, I agree that I can't imagine it being harmful and worst case, it's not as helpful as you wanted it to be.
This article was less helpful in understanding risk than I’d hoped, probably because whatever data there is lacks the detail that would help all of us here match our own health status and circumstances up to calculate our personal risk.
I’m brainstorming here: would you consider doing a round-up where various Covid experts (doctors, researchers, other epidemiologists, etc) say what they are doing to protect themselves/their families, when, and why? For example, someone studying long COVID, like Dr Iwasaki (Yale) — is she living like it’s April 2020? If so, why? What activities do other specialists feel safe engaging in?
Are any of these specialists using nasal sprays like Enovid? Not everyplace has good ventilation, and it’s not possible to mask everywhere.
If the name of the game really is avoiding infection, and thus masking most of the fall and winter (and part of the summer), for forever…well, that’s pretty unwelcome news. It would be great to have a carefree visit with the dentist.
I was frankly startled at the UK data — I underestimated the amount of serious, permanent disability.
I’d also really like to know this. I think, in general, people are reluctant to share their personal practices because of what that opens them up to on the internet. a lot of these scary studies are largely from 2020 and/or pre-vax population, so I too have trouble gauging what my risk is today as someone who keeps up with vaccines and delayed my first infection til 2025
It's jarring to me because the only place I really hear about long covid is on places like this and social media. When my friends get covid (which is rare to hear about in the first place) they appear to recover just fine. No increases in illness or weird symptoms that I am told "everyone" is having according to some people. I myself have only had detected Covid once in 2023 with no long term side effects that I can tell.
I feel that there must be some sort of clustering occurring. When I read into the covid conscious subreddits they all discuss how they are getting infected repeatedly despite masking(!), how their friends are getting long covid, how they notice people getting worse... I just don't observe any of that in my daily life and I only really started worrying about it in 2024 due to my own obsessive personality traits.
I know plenty of people who developed long covid in the first 2.5 years. Most have recovered at least 80% of the way, although if they get reinfected, some of them backslide for several months. Nobody I know seems to be having lingering symptoms of recent infections — but if they don’t mask, they’re definitely getting it 1-2x/year, even if vaccinated — some of them despite 2 vaccines a year.
But…seriously, masking at the dentist isn’t possible. I’ve had multiple serious surgeries recently, and begged my nurses to re-mask me with my N-95 as soon as my OR airway support was removed, but I still woke up in recovery with no mask in sight each time, with dozens of other unmasked patients exhaling all around me. Constant vigilance is not possible while under anesthesia.
It truly is hard to know how to proceed.
Just like we had a Swiss-cheese approach to avoiding infection, we need a new, optimized Swiss-cheese approaches that modify risk while living more normal lives. Surely we can crowd-source best practices for multiple scenarios (including “so you have Covid, again”).
Went to schedule my Covid vaccine only to be told I am not eligible as I am under 65. I have long Covid but this is not a pre existing condition listed by the CDC 🤬
Thank you for this update!
I am in the UK and have been diagnosed with ME/CFS purely because I didn’t have a positive Covid test directly prior to getting sick (even though in hindsight I got the same LC symptoms six months before after having Covid, then it cleared up for a few months before coming back). I got Covid three times and got my three doses of the vaccine before getting ME. But I was very healthy and fit prior to Covid coming along so I refuse to rule out that Covid caused my ME.
Also important to note, the UK is currently shutting down long covid clinics. So I think we’ll see more people diagnosed with ME in order to get treatment (not that it adds up to much). This doesn’t seem to be a policy but I feel it will become the trend. Getting diagnosed with either chronic illness is still such a mess despite the significant number of people who have LC.
On a positive note, anyone here diagnosed with LC, it’s a good idea to look up ME/CFS info as it overlaps so much with LC.
Thank you for your always informative assessment.
I have always felt that the symptoms of long Covid are remarkably similar to my experience with untreated Lyme disease.
I knew I had been bit by a deer tick and that it had been adhered to my calf for a couple of days. Long story short, I could not get treatment. I was living in Oregon and actually had my doctor literally scream in my face that I could not have Lyme disease because there was no Lyme disease in Oregon. (I never had the bull's-eye rash which, as I am sure you are aware, is a symptom only in 50% of Lyme cases)
I was in bed for nearly 2 months, barely able to get up and heat up a can of soup. It took me almost a year before I could sit up and eat at the kitchen table. I could not pass a day without having one or two naps. A feeling would suddenly come over me (severe brain fog) and if I did not take a nap I felt as though I would fall flat on my face. if I went out to grocery shop, I would be knocked out for two or three days after. I lost my ability to remember long numbers. Previously I could look at a number with 20 digits and repeat it back. Now, I couldn't even remember an entire phone number. (I did mental exercises with games on my phone for years and my ability to remember numbers has improved, although not entirely)
I was retired and so was able to "listen to my body" and just rest as much as I had to. It took at least two years before I occasionally could get through a day without a nap. It did not take long to discover that even a quarter of a glass of wine would set me back a week.
It's almost 6 years now and I'm just beginning to feel somewhat normal, although that year in bed wreaked havoc on my muscle strength. Any exercise I do has to be very gradually introduced or I am wiped out.
I am convinced that the best thing for any such illness is rest!
This sounds awful and you are right, very like long covid/ME/CFS. Rest is definitely a pillar of recovery but as so many people who get it are of working age, it’s basically disabling us for years at a time.
There is a doctor Dr Lambert in Dublin who specialised in Lyme disease treatment and then pivoted to Long Covid treatment as he also felt they were similar. He’s spoke on a long Covid podcast and on YouTube interview if you want to look him up.
Thank you for this information. I will look him up.
Yes, I am very aware that I was fortunate to be able to rest. Any time I exerted myself I would see an immediate decline. Even with completely adhering to this regimen, it took nearly 2 years before I approached maybe 75% energy/normality. And I still had to be very careful not to push myself at all. To this day I am mindful of my activity and limits.
I also was very fortunate that my friends and family understood that at any moment I might need a nap.
How I'm thinking about long c0v*d: another point of view.
When you know what LC and ME/CFS look like, you might decide that any risk above zero is not acceptable. (Also, population data ≠ individual risk.)
I'm avoiding infection w sars2, a vascular neuroimmune disease with a respiratory route, because that's the only way to ensure that I don't get LC or any form of PASC, including cardiovascular, endocrine, neurological complications, etc. I continue to use the simple tool of mask use in indoor shared spaces, as well as air filtration/ventilation, monitoring CO2 as a proxy (and sars2 aerosols are less stable when CO2 is low), dining outdoors, and testing before visiting with loved ones unmasked. I limit the number of times I am not masked.
Until we have sterilizing nasal immunization, my mask is my best tool. My once or twice a year jab is the back-up plan, not the major strategy.
Let's understand the range of harm from PASC so we will believe and support people who are suffering.
longcovidjustice.org
This includes resources to share w your drs, because they didn't learn this stuff in med school. There's a link to a clinical care guide. Please share this important resource, and skim it to get an idea of what LC and ME/CFS look like.
I've had ME/CFS for 25 years. I can't afford to get LC, and neither can you. Data shows that a large portion of people w LC have a phenotype that resembles ME/CFS. ME has worse quality of life than MS or terminal cancer. There is no treatment, certainly no cure. Help is not on the way any time soon. There are only a handful of clinicians in the US who have expertise. Research and public health agencies in the US are being jeopardized. To this day and despite evidence, there is an absurd movement (largely in the UK) to deny ME/CFS and undermine progress. I have hope, but my realistic eyes are wide open.
These reports are a very important contribution -- thanks so much for doing this! Relative to the long term dangers of a COVID infection it might be worthwhile to examine the very large [641,704 patients] German study [Tesch et al (2023) "Incident autoimmune diseases in association with a SARS-CoV-2 infection: A matched cohort study"]. In COVID patients they report a 42% higher likelihood of acquiring an autoimmune condition compared to controls; COVID patients with a preexisting autoimmune disease had a 23% higher likelihood of being diagnosed with another autoimmune disease. I have only the non-reviewed preprint from medRxiv, but this must have been published by now. Something to consider. Thanks. RC Eaton PhD