Thanks - excellent article. I'm interested in how the symptoms of Long Covid as described above (CFS) interact with the generalized organ and system damage reported. So for example - is shortness of breath an effect of something like CFS, or is it lung/heart damage; or is it some combination? Even before being vaccinated, and being 60+, Long Covid seemed like far more of a worrying risk to me than death, but it was hard to get it through the heads of anti-vaxxers (I live near the epicenter of anti-science anti-vax conspiracy thinking in Australia) to think in terms of a significant chance of long-term constraints to their future freedom - to exercise, and live a normal life, rather than a low risk of dying.
The only thing that's missing is the "why do we know so little about Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
(Please do not stop digging because of complexity)
Follow the money.
ME/CFS is the most underfunded disease to disease burden.
Despite a disease burden that is Double HIV with no treatment, funding at the NIH is only 7% of disease burden. The story is the same no matter which government in the world you choose. In the US, 13 Million dollars a year, for a disease that is having an economic impact of 51 Billion dollars a year.
"A study focusing on the disease myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), ∼75% of whom afflicted are women,2 found that disease to be the lowest funded (relative to disease burden) in the National Institutes of Health (NIH) portfolio.3,4 In carrying out the ME/CFS study, it was observed that some of the lowest funded diseases relative to disease burden were ones that affect primarily women. " (Mirin, A July 2021 https://doi.org/10.1089/jwh.2020.8682)
ME/CFS has been psychologized, meaning that money that could have been spent on biomedical science to find a diagnostic test, and treatments to slow progression of the disease have gone elsewhere.
Dr's are not educated to diagnose it, and treat the symptoms that can be treated which is part of the reason why suicide rates are so high (7 times normal population.
If you are a healthy, able bodied person who read this, please consider organizing a run/walk/bake sale for charities like Open Medicine Foundation which is leading the way in biomedical science for ME/CFS.
Thanks Tomas for covering a really challenging subject with lots of unknowns. So much of what is discussed is hospitalization and death because that’s easy to quantify, yet being vaccinated, my biggest concern is long COVID. I agree with your conclusions. My hypothesis was that long Covid was the result of the blood clotting mechanism causing random organ damage. It first occurred to me after watching a 60 minutes episode about 9 months ago that showed brain damage in autopsied patients with long Covid. There is no reason that the damage should be confined to the brain. Since some organs recover better than others from damage, it seemed this might be the distinction between those that recover from long Covid and those that have a chronic condition. I haven’t been able to square this hypothesis with the idea people recover with the vaccine. Thanks again sir for a refreshing and bold take on a tough subject.
To be clear, it looks like the blood clotting is yet another type of Long COVID, which I hope to cover in the premium article this week, along with chronic loss of smell, post-intensive care syndrome, and more.
as you wrote: "most frustrating part: there have been many precedents of post-viral CFS, including the epidemic of a CFS-like illness just after the 1918 flu crisis."
Another frustration is the frequency of "hysteria" and conversion reactions. I remember a young man who controlled the expectations of his close family members by the belief he had heart disease. He and the family developed great trust in me and after extensive testing when I declared his heart to be normal he developed debilitating headaches.
Conversion reactions like this are well described in the psych literature and should not be the first thing considered for a patient's complaints but only after normal testing. Also to be considered is the effect of prolonged inactivity and bed rest on heart rate and muscle tone. Astronauts after periods in space have high heart rates and orthostasis.
Good luck figuring this problem out Tomas ... you will help alot of people.
ME/CFS doesn't show up in normal testing, because that's the not the problem to quote Dr. Ron Davis, director of the Stanford Genome Center. But if you dive deeper, there's problems all over the place. "ME/CFS is a molecular disease", also a quote from Davis.
The ME/CFS "hysteria" libel's origin derives from Beard and McEvedy who wrote their misogynist paper without ever seeing a patient from the Royal Free Outbreak. The sole basis for their unfalsifiable hypothesis was that the patients were primarily women. It was from there that also the idea of "deconditioning" came from, even though the Infectious Disease specialist who witnessed the outbreak, Dr. Melvin Ramsay, described exercise intolerance as of the major symptoms of the patients. "The most characteristic presentation is profound fatigue and muscle weakness coming on during the day and increasing with exercise" (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1607215/) The abnormal response to exercise ME/CFS patients have has now been documented by physiotherapists, cardiopulmonologists, et cetera using Cardio Pulmonary Exercise Testing (CPET). It is not deconditioning. It's all in the biomedical literature according to objective measure.
There's 9,000 papers documenting the differences in biological abnormalities of ME/CFS patients and healthy controls. Cardiac and immunological abnormalities were found decades ago, and ignored. Many were not replicated until 2017 because of lack of funding. It's easy to slur something as hysteria, when the doctors ignore the patients, ignore the biomedical literature, and refuse to fund biomedical research to find answers. It's a vicious cycle that feeds on itself. ME/CFS patients are trying with all that we have - with what little we have - to keep Long Covid from going the same way. If the hypothesis isn't testable and falsifiable. If the "scientist" isn't willing to be wrong, then what the hell are they doing?
There are more than a dozen potential biomarkers for ME/CFS.
ME/CFS patients have lower V02 max on 2 Day CPET, they have pre-load failure on iCPET, immune abnormalities, neurological abnormalities, and metabolic abnormalities. One of the top 100 papers in Nature last year was by Dr. Alain Moreau on micro RNA's in ME/CFS patients after exertion. (https://www.nature.com/articles/s41598-020-76438-y)
What would be really great is that people who claim to love science and evidence, would provide some for hysteria, rather than just assuming it is because there's no immediate evidence of illness according to their lack of knowledge. So often hysteria and its many euphemisms are used to gaslight patients, and ensure that they are not provided proper medical care, often due to the doctors own biases which are left unchecked.
If it is evidence you want. Find a biomarker for hysteria. What is the biological process of hysteria? How can you measure it objectively? Prove your claim in the exact same manner and to the same exact standard you demand of all science. Anything less is based on bias.
Hi Tomas, I have ME/CFS. I have been looking forward to this article and wanted to thank you for helping bring more attention to our cause.
Your estimate of ME/CFS-like long covid could be improved by citing a range of studies. While a few studies show the 12% figure, most studies show a prevalence in the 20 to 30% range. The Australian study you cite shows 19% still have long covid after 8 months (click your link and check again). The SARS study you cite shows around 25% have long SARS. I gather a few peer reviewed studies in my blog (https://obscurata.wordpress.com/2021/06/17/is-long-covid-about-to-block-the-economic-recovery/)
You also seem to have the idea that the more severe long covid cases are ME/CFS-like (your estimate of 2-3% of Covid CFS). But mild cases of ME/CFS are possible and more likely. Only 25% are housebound (https://www.mdpi.com/2227-9032/9/2/106/pdf). I lived with ME/CFS for two years working the whole time before suddenly becoming bedbound. I think all long covid cases that last more than a year are Long CFS.
The main difference between ME/CFS and long covid is that some cases of long covid can be explained by organ damage. A key diagnostic criterion for ME/CFS is that fatigue that has no other known cause.
You don't cite a source for saying vaccines cut long covid risk by 75%. The only study I'm aware of says it cuts it in half (https://www.bbc.com/news/health-58410354).
But thank you for drawing more attention to long covid and ME/CFS. Both diseases are drastically underfunded. Getting a more accurate estimate of their likelihood will help secure support and funding for these awful diseases.
I am so, so sorry to hear. I really hope you get better, and this COVID thing might be the silver lining that brings more dollars and attention to this issue.
I will look into the studies you mention.
Do you have studies on the long-term evolution of short-term, mild CFS? If it's true that the 2-3% could become 10%, that's serious. The paper you link to shows proportions, but not evolution from one bucket to the other.
I cite 3 sources for the vaccines. Can you look again?
Hi, on the vaccines - sorry I misread. Your 75% figure comes from a 50% less chance of catching covid plus a 50% less chance of catching long covid. We have the same figure - 50% less chance of catching long covid.
On progression of mild MECFS, the story tells you more than the data. If you keep pushing past your boundaries, you will get worse. If you go over a little, you get post exertional malaise. If you go over a lot (or if you get PEM too often) you will have a crash where you semi permanently become worse. Its partly a matter of willpower, but it's also very difficult to live a life with a 10km/hr speed limit. I've had a mild crash from things like going to an important meeting at work, standing for ten mins to network at a work event etc.
The other big problem is that doctors tell you to exercise as a solution (it's called Graded Exercise Therapy). Look into this controversy - it's based on bad science and it makes us worse. The solution is to exercise within your energy bubble (see the studies by Nancy Klimas and Workwell Institute on this). You can slowly improve if you exercise within your energy limits.
Maybe we can do one thing: do you want to create a Google spreadsheet where you have each of the steps in the funnel along with the papers that support the orders of magnitude?
Also, I had a read of your friend astralcodex's blog. I agree with their final result.
Distinguishing between mild and severe long covid is useful. But even mild cases can heavily restrict your life. I love to cycle, even when mild I couldnt cycle a block or run to catch the bus or dance at my best friends wedding.
By my calculations, theres a 10 to 35% chance of catching long covid (with 22.5% from the UK ONS being the best real world estimate), then using your 60% figure of people with severe long covid gets us a 10% chance of long covid if you are unvaccinated.
It's a 3% chance if you are vaccinated (50% x 50% x 60% x 22.5%), so I agree with your friends calculation.
Concerning the risk for 4 children: It's not 20 %, it's 18.5 %. Formula: 1-(1-0.05)^4
With your formula, someone with 20 children would have 1 child developing long COVID with 100 % probability. Obviously, this is wrong because one can get lucky with none of them getting it or unlucky with multiple of them getting it.
I was suffering from MECFS when my partner brought Covid into our house in February of 2020. I was so cross with her at the time — I thought her bringing the virus into the house might kill me. My fears were unfounded. I didn't get her covid cough or loss of taste and smell and neither did I get her flu symptoms despite us being in close proximity and her coughing everwhere. All I got was a slightly scratchy sore throat for 5 days. I solved the problem by high dosing vitamin C and a 3% hydrogen peroxide throat gargle and it went away. I had a blood serum antibody test a week later and it came back negative. After some detective work, a Swedish study from August 2020 indicated that I had been able to ward off the bug because I had T cell immunity from a previous coronavirus https://news.ki.se/immunity-to-covid-19-is-probably-higher-than-tests-have-shown What this shows is that MECFS patients don't have panic about Covid. I experienced the first iteration fresh from China and nothing happened to me. If I was supposed to die, it didn't happen. With all this in mind, long coviders need to recognise that their condition is just like MECFS, but MECFS is a spectrum. Also you can't have MECFS unless you've been suffering for more than six months, so doctors need to circumspect when patients think they have long covid. Severe MECFS cases like Brea, Whitney above etc are rare. You should read Dr Raymond Perrin's 2nd edition book on treating CFSME with neural lymphatic drainage and read Dr Myhill's book on adopting a paleo ketogenic diet. I adopted both these protocols and within 3 years, I have gone to being bedridden and sleeping in a darkened room with ear defenders with chronic palpitations and breathlessness to playing tennis once a week. I did all this without the help of doctors — in fact most doctors have been bloody awful. Tomas Puyeo, you are welcome to interview me. Also Tomas, you should be aware that Ms Brea was actually suffering from a spinal issue and she had surgery to correct it, so strictly speaking, she was misdiagnosed for MECFS. I could go on, but if you want more info, please ask.
The effort put into this write up is appreciated as it is a good conversation starter about the available information pertaining to this enigmatic condition. However, it lacks some fundamental and important nuances. First and foremost, the sequelae of CFS/ME are generally addressed in this order: nutritional deficiency, chemical/toxin overload, chronic viral infection with dormant/active cycles. The claim that that otherwise healthy people are suffering from long covid needs to be cross-examined. The modern medical definition of healthy is narrow and non-comprehensive. The majority of modern people suffer from long term nutritional deficiency coupled to stress, such that outright comorbidity may be dismissed while overlooking subclinical physiological burdens/deficits.
Is there is a latent or residual viral problem with covid? i.e. could there be residual viral particles or their proteins residing in the body, such as in nervous tissue (nerve ganglia), similar to EBV, HSV, and others? While I personally find this route unlikely, it may be a worthy research question as prominent MDs are coming forward to attest to the effectiveness of ivermectin, interferon and myoclonal drugs in long covid. Why should these be effective, even marginally, if the pathogen is completely gone?
Is there a major nutrient or cofactor deficiency that was already borderline pre-infection but was pushed into deficit range during infection? Many natural healthcare systems are successfully addressing long-covid right now with notable success rates.
The psychogenic origins of CFS/ME have been mainly debunked in the past 20 years following the rise of more widely available testing technologies to look for subclinical etiologies in these patients. One patient of mine in 2017 had post-influenza malaise lasting 6+ months, followed by CFS/ME for 2 years which was eventually addressed with heavy metal chelation. There seems to be an emphasis in the patient community on treating mitochondrial dysfunction, of which heavy metal chelation may be one component.
CFS/ME, like many chronic illnesses, are multifactoral and often require multifocal treatment. Long covid is only threatening to static models. The reality is that individualized care is successfully managing many of these cases. Unfortunately, the current anti-scientific narrative is preventing the very discussions that could lead to promising research questions. It would be worthwhile to utilize a range of tools rather than corral the medical model (and the public) into one or two modalities that have severely limited outcomes.
Have you considered this may be part of the reason that unemployment remains elevated even as job openings are at very high levels. This is despite many states reducing the economic unemployment incentive from the Federal plus up. https://numbernomics.com/unemployment-vs-job-openings-2/
It might very well be contributing. My guess is that it's not a lot of people though. Say 20% of Americans have been infected without a vaccine. That's ~0.4% of the population that couldn't work. Enough to make a dent, but not explain the lion's share?
It's possible I suppose. But again my problem is that there are apparently 1.2 million people crippled and bed ridden in the US. That is a huge number to not be reported on or frankly not even noticed.
The numbers going into the machine are incorrect, so we're getting bad answers out. Most long covid studies have a persistent post viral cough as a symptom...well I suppose the cough my wife got after a bad sore throat in 2019 counts as long covid then. It lasted months.
I suspect the actual number of people with "long covid" will be very much smaller once you take all the normal post viral issues everyone always has after a virus out of the equation. Which will again drop the number of people at risk from debilitating CFS/long covid down to very small numbers. Certainly not 3% of people how catch covid.
3% of the 41 million cases the US has recorded, so probably lowballing it with the number of unreported/asymptomatic cases. I think someone would have noticed 1.2 million bedridden people, no? Even in countries with smaller populations and much better healthcare systems you don't see these numbers? Sweden should have around 5000 people crippled and bed ridden according to these numbers, I can't find anything to suggest this is the case.
I think the maths Tomas uses to get to 2-3% crippling long covid falls down at the "10% of people who get Covid will get long covid" The definitions used in most studies of "long covid" are so vague as to be useless. One recent study of long covid in children in the UK found that over 50% of the control group (who didn't have covid) reported having all the qualifying symptoms of long covid at the 6 month mark.
This study suggest that 66% of their long term COVID subjects (versus 10% control) were positive for Epstein-Barr Virus (EBV, pfeiffer's disease) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8233978/ now the conclusion that this may lead to CFS might be similar, but the chain of events would be different.
Actually, I just has a look at the other study you cite. It finds "At least one of these characteristic symptoms was present in 27•8% (123/442) and 34•8% (123/353) at month 4 and 7 post-infection, respectively". That's starkly different from the 11% figure you cite in the text.
You might want to rewrite this section. As I said in my other post, the UK study is an outlier and criticized for severe methodological issues. Most other studies show a 20 to 30% long covid prevalence rate.
Yes, you're right! Prevalence of Long COVID is higher than ~10%.
But what I'm trying to assess is the probability of long-term CFS. So I need to discount (1) other symptoms that don't correspond to CFS (eg PICS is a huge one), and (2) the CFS-like symptoms that disappear over time. That's what the 10% does.
Then there's again the % of CFS that is crippling. That's what gets it to ~2-3%.
You left out one big issue -- current policies are for everyone to be catch COVID MANY TIMES over their lifetimes, not just once, and despite vaccination.
So we will be rolling that 2-3% dice multiple times.
Even if it becomes a 1.5% dice, that is still quite bad.
But on the other hand, it is quite likely that the dysregulation of the immune system will compound over each subsequent episode so that subsequent episodes will have a higher chance of leading to LongCOVID.
Yes, but in all likelihood if you catch it once, you probably won't develop CFS the next time I would assume. But I don't know. Is there any data on this for other diseases?
Why do you assume that? People die on reinfections, and they get LongCOVID after vaccination. Why would they never get LongCOVID on reinfection?
There is indeed no systematic study of it, primarily because the medical establishment approached the pandemic from the beginning with the blatantly unfounded (given that this is a coronavirus) assumption that immunity will be permanent, so reinfections were first denied, then ignored, and this there have not been nearly enough studies of them.
For the other viruses that cause CFS there are no studies either, because almost nobody who develops CFS knows which virus exactly caused it. And for many of those viruses reinfections does not really apply, as they are either latent (e.g. EBV) or immunity is lifelong and sterilizing.
Also, CFS is distinct from the cellular damage to lungs, hearts, kidneys, brains, etc., and I don't think there is an argument whether that is happening on reinfections with SARS-CoV-2.
Thank you for a very valuable and timely article. One small part could be left out: "As I read somewhere on Twitter², the government says COVID only affects a few children, but I only have a few children. "
If you only have a few children, and only a few children (in the population) are affected, then your chance of being affected is (a few) squared.
The chance is the same because it's an intensive metric.
But the quote is not math. The quote means "the likelihood might be small, but if you're the one who has the bad luck of having your kid suffer from it, your life will be destroyed."
It is not math but is logically ambiguous. Adding what it means as you said would be clear. Otherwise one can say it means my few children are unlikely to be among the few that got long covid.
Thanks - excellent article. I'm interested in how the symptoms of Long Covid as described above (CFS) interact with the generalized organ and system damage reported. So for example - is shortness of breath an effect of something like CFS, or is it lung/heart damage; or is it some combination? Even before being vaccinated, and being 60+, Long Covid seemed like far more of a worrying risk to me than death, but it was hard to get it through the heads of anti-vaxxers (I live near the epicenter of anti-science anti-vax conspiracy thinking in Australia) to think in terms of a significant chance of long-term constraints to their future freedom - to exercise, and live a normal life, rather than a low risk of dying.
I will cover this in the premium article!
I agree on your other point. That's one of the reasons why I focused on Long COVID.
This is a good article.
The only thing that's missing is the "why do we know so little about Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?
(Please do not stop digging because of complexity)
Follow the money.
ME/CFS is the most underfunded disease to disease burden.
Despite a disease burden that is Double HIV with no treatment, funding at the NIH is only 7% of disease burden. The story is the same no matter which government in the world you choose. In the US, 13 Million dollars a year, for a disease that is having an economic impact of 51 Billion dollars a year.
"A study focusing on the disease myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), ∼75% of whom afflicted are women,2 found that disease to be the lowest funded (relative to disease burden) in the National Institutes of Health (NIH) portfolio.3,4 In carrying out the ME/CFS study, it was observed that some of the lowest funded diseases relative to disease burden were ones that affect primarily women. " (Mirin, A July 2021 https://doi.org/10.1089/jwh.2020.8682)
ME/CFS has been psychologized, meaning that money that could have been spent on biomedical science to find a diagnostic test, and treatments to slow progression of the disease have gone elsewhere.
Dr's are not educated to diagnose it, and treat the symptoms that can be treated which is part of the reason why suicide rates are so high (7 times normal population.
If you are a healthy, able bodied person who read this, please consider organizing a run/walk/bake sale for charities like Open Medicine Foundation which is leading the way in biomedical science for ME/CFS.
Thank you for your time.
Thanks Tomas for covering a really challenging subject with lots of unknowns. So much of what is discussed is hospitalization and death because that’s easy to quantify, yet being vaccinated, my biggest concern is long COVID. I agree with your conclusions. My hypothesis was that long Covid was the result of the blood clotting mechanism causing random organ damage. It first occurred to me after watching a 60 minutes episode about 9 months ago that showed brain damage in autopsied patients with long Covid. There is no reason that the damage should be confined to the brain. Since some organs recover better than others from damage, it seemed this might be the distinction between those that recover from long Covid and those that have a chronic condition. I haven’t been able to square this hypothesis with the idea people recover with the vaccine. Thanks again sir for a refreshing and bold take on a tough subject.
Glad to hear!
To be clear, it looks like the blood clotting is yet another type of Long COVID, which I hope to cover in the premium article this week, along with chronic loss of smell, post-intensive care syndrome, and more.
Yeah, worrysome
as you wrote: "most frustrating part: there have been many precedents of post-viral CFS, including the epidemic of a CFS-like illness just after the 1918 flu crisis."
Another frustration is the frequency of "hysteria" and conversion reactions. I remember a young man who controlled the expectations of his close family members by the belief he had heart disease. He and the family developed great trust in me and after extensive testing when I declared his heart to be normal he developed debilitating headaches.
Conversion reactions like this are well described in the psych literature and should not be the first thing considered for a patient's complaints but only after normal testing. Also to be considered is the effect of prolonged inactivity and bed rest on heart rate and muscle tone. Astronauts after periods in space have high heart rates and orthostasis.
Good luck figuring this problem out Tomas ... you will help alot of people.
ME/CFS doesn't show up in normal testing, because that's the not the problem to quote Dr. Ron Davis, director of the Stanford Genome Center. But if you dive deeper, there's problems all over the place. "ME/CFS is a molecular disease", also a quote from Davis.
The NIH is holding a 2 day workshop this week on the "Biology of Fatigue". (https://web.cvent.com/event/4630788d-baa2-47fb-af01-0f5b8d0d92bd/websitePage:645d57e4-75eb-4769-b2c0-f201a0bfc6ce ) You should probably check it out. There's also a publicly available NIH Conference to "Accelerate ME/CFS research" that was held in 2019. It's available on youtube ( https://youtube.com/playlist?list=PLhO4nWkiP5QRt_Hjd4B-PWpKMlIJxXXrM )
The ME/CFS "hysteria" libel's origin derives from Beard and McEvedy who wrote their misogynist paper without ever seeing a patient from the Royal Free Outbreak. The sole basis for their unfalsifiable hypothesis was that the patients were primarily women. It was from there that also the idea of "deconditioning" came from, even though the Infectious Disease specialist who witnessed the outbreak, Dr. Melvin Ramsay, described exercise intolerance as of the major symptoms of the patients. "The most characteristic presentation is profound fatigue and muscle weakness coming on during the day and increasing with exercise" (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1607215/) The abnormal response to exercise ME/CFS patients have has now been documented by physiotherapists, cardiopulmonologists, et cetera using Cardio Pulmonary Exercise Testing (CPET). It is not deconditioning. It's all in the biomedical literature according to objective measure.
There's 9,000 papers documenting the differences in biological abnormalities of ME/CFS patients and healthy controls. Cardiac and immunological abnormalities were found decades ago, and ignored. Many were not replicated until 2017 because of lack of funding. It's easy to slur something as hysteria, when the doctors ignore the patients, ignore the biomedical literature, and refuse to fund biomedical research to find answers. It's a vicious cycle that feeds on itself. ME/CFS patients are trying with all that we have - with what little we have - to keep Long Covid from going the same way. If the hypothesis isn't testable and falsifiable. If the "scientist" isn't willing to be wrong, then what the hell are they doing?
There are more than a dozen potential biomarkers for ME/CFS.
https://me-pedia.org/wiki/Diagnostic_biomarker <--- not even the full list.
ME/CFS patients have lower V02 max on 2 Day CPET, they have pre-load failure on iCPET, immune abnormalities, neurological abnormalities, and metabolic abnormalities. One of the top 100 papers in Nature last year was by Dr. Alain Moreau on micro RNA's in ME/CFS patients after exertion. (https://www.nature.com/articles/s41598-020-76438-y)
What would be really great is that people who claim to love science and evidence, would provide some for hysteria, rather than just assuming it is because there's no immediate evidence of illness according to their lack of knowledge. So often hysteria and its many euphemisms are used to gaslight patients, and ensure that they are not provided proper medical care, often due to the doctors own biases which are left unchecked.
If it is evidence you want. Find a biomarker for hysteria. What is the biological process of hysteria? How can you measure it objectively? Prove your claim in the exact same manner and to the same exact standard you demand of all science. Anything less is based on bias.
You can read two reviews on the objectively measured similarities between ME/CFS and LongCovid. I also recommend reading ME/CFS Essential Diagnosis and Management which was recently published in Mayo Clinic Proceedings. (https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext_ )
1 Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome
Komaroff, Anthony L. et al.
Trends in Molecular Medicine, Volume 27, Issue 9, 895 - 906
2. Redox imbalance links COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome
Bindu D. Paul, Marian D. Lemle, Anthony L. Komaroff, Solomon H. Snyder
Proceedings of the National Academy of Sciences Aug 2021, 118 (34) e2024358118; DOI: 10.1073/pnas.2024358118
Hi Tomas, I have ME/CFS. I have been looking forward to this article and wanted to thank you for helping bring more attention to our cause.
Your estimate of ME/CFS-like long covid could be improved by citing a range of studies. While a few studies show the 12% figure, most studies show a prevalence in the 20 to 30% range. The Australian study you cite shows 19% still have long covid after 8 months (click your link and check again). The SARS study you cite shows around 25% have long SARS. I gather a few peer reviewed studies in my blog (https://obscurata.wordpress.com/2021/06/17/is-long-covid-about-to-block-the-economic-recovery/)
The UK study has been criticized because it leaves out the most common symptoms like brain fog (see https://www.theatlantic.com/science/archive/2021/09/covid-19-long-haulers-pandemic-future/619941/). By contrast, the U.K.’s Office for National Statistics estimated that 22 percent of people with COVID-19 continue to have symptoms five weeks after infection.
You also seem to have the idea that the more severe long covid cases are ME/CFS-like (your estimate of 2-3% of Covid CFS). But mild cases of ME/CFS are possible and more likely. Only 25% are housebound (https://www.mdpi.com/2227-9032/9/2/106/pdf). I lived with ME/CFS for two years working the whole time before suddenly becoming bedbound. I think all long covid cases that last more than a year are Long CFS.
The main difference between ME/CFS and long covid is that some cases of long covid can be explained by organ damage. A key diagnostic criterion for ME/CFS is that fatigue that has no other known cause.
You don't cite a source for saying vaccines cut long covid risk by 75%. The only study I'm aware of says it cuts it in half (https://www.bbc.com/news/health-58410354).
But thank you for drawing more attention to long covid and ME/CFS. Both diseases are drastically underfunded. Getting a more accurate estimate of their likelihood will help secure support and funding for these awful diseases.
I am so, so sorry to hear. I really hope you get better, and this COVID thing might be the silver lining that brings more dollars and attention to this issue.
I will look into the studies you mention.
Do you have studies on the long-term evolution of short-term, mild CFS? If it's true that the 2-3% could become 10%, that's serious. The paper you link to shows proportions, but not evolution from one bucket to the other.
I cite 3 sources for the vaccines. Can you look again?
Hi, on the vaccines - sorry I misread. Your 75% figure comes from a 50% less chance of catching covid plus a 50% less chance of catching long covid. We have the same figure - 50% less chance of catching long covid.
On progression of mild MECFS, the story tells you more than the data. If you keep pushing past your boundaries, you will get worse. If you go over a little, you get post exertional malaise. If you go over a lot (or if you get PEM too often) you will have a crash where you semi permanently become worse. Its partly a matter of willpower, but it's also very difficult to live a life with a 10km/hr speed limit. I've had a mild crash from things like going to an important meeting at work, standing for ten mins to network at a work event etc.
The other big problem is that doctors tell you to exercise as a solution (it's called Graded Exercise Therapy). Look into this controversy - it's based on bad science and it makes us worse. The solution is to exercise within your energy bubble (see the studies by Nancy Klimas and Workwell Institute on this). You can slowly improve if you exercise within your energy limits.
For data, this page collects all the good studies
https://me-pedia.org/wiki/Prognosis_for_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome#:~:text=The%20prognosis%20for%20myalgic%20encephalomyelitis,of%20patients%20remains%20significantly%20impaired.
Maybe we can do one thing: do you want to create a Google spreadsheet where you have each of the steps in the funnel along with the papers that support the orders of magnitude?
Sorry, I dont understand? It's a single process where if you overload your body the body becomes permanently weaker. That's the core trait of ME/CFS
Also, I had a read of your friend astralcodex's blog. I agree with their final result.
Distinguishing between mild and severe long covid is useful. But even mild cases can heavily restrict your life. I love to cycle, even when mild I couldnt cycle a block or run to catch the bus or dance at my best friends wedding.
By my calculations, theres a 10 to 35% chance of catching long covid (with 22.5% from the UK ONS being the best real world estimate), then using your 60% figure of people with severe long covid gets us a 10% chance of long covid if you are unvaccinated.
It's a 3% chance if you are vaccinated (50% x 50% x 60% x 22.5%), so I agree with your friends calculation.
Re: footnote 2, here's the one I saw: https://twitter.com/AshleySWeitz/status/1434581862110797827?s=20
Thx!
Good (scary) article/info
Concerning the risk for 4 children: It's not 20 %, it's 18.5 %. Formula: 1-(1-0.05)^4
With your formula, someone with 20 children would have 1 child developing long COVID with 100 % probability. Obviously, this is wrong because one can get lucky with none of them getting it or unlucky with multiple of them getting it.
You’re right! I rounded up to simplify, but it’s good to make sure ppl don’t misunderstand the formula. So thx!
I was suffering from MECFS when my partner brought Covid into our house in February of 2020. I was so cross with her at the time — I thought her bringing the virus into the house might kill me. My fears were unfounded. I didn't get her covid cough or loss of taste and smell and neither did I get her flu symptoms despite us being in close proximity and her coughing everwhere. All I got was a slightly scratchy sore throat for 5 days. I solved the problem by high dosing vitamin C and a 3% hydrogen peroxide throat gargle and it went away. I had a blood serum antibody test a week later and it came back negative. After some detective work, a Swedish study from August 2020 indicated that I had been able to ward off the bug because I had T cell immunity from a previous coronavirus https://news.ki.se/immunity-to-covid-19-is-probably-higher-than-tests-have-shown What this shows is that MECFS patients don't have panic about Covid. I experienced the first iteration fresh from China and nothing happened to me. If I was supposed to die, it didn't happen. With all this in mind, long coviders need to recognise that their condition is just like MECFS, but MECFS is a spectrum. Also you can't have MECFS unless you've been suffering for more than six months, so doctors need to circumspect when patients think they have long covid. Severe MECFS cases like Brea, Whitney above etc are rare. You should read Dr Raymond Perrin's 2nd edition book on treating CFSME with neural lymphatic drainage and read Dr Myhill's book on adopting a paleo ketogenic diet. I adopted both these protocols and within 3 years, I have gone to being bedridden and sleeping in a darkened room with ear defenders with chronic palpitations and breathlessness to playing tennis once a week. I did all this without the help of doctors — in fact most doctors have been bloody awful. Tomas Puyeo, you are welcome to interview me. Also Tomas, you should be aware that Ms Brea was actually suffering from a spinal issue and she had surgery to correct it, so strictly speaking, she was misdiagnosed for MECFS. I could go on, but if you want more info, please ask.
The effort put into this write up is appreciated as it is a good conversation starter about the available information pertaining to this enigmatic condition. However, it lacks some fundamental and important nuances. First and foremost, the sequelae of CFS/ME are generally addressed in this order: nutritional deficiency, chemical/toxin overload, chronic viral infection with dormant/active cycles. The claim that that otherwise healthy people are suffering from long covid needs to be cross-examined. The modern medical definition of healthy is narrow and non-comprehensive. The majority of modern people suffer from long term nutritional deficiency coupled to stress, such that outright comorbidity may be dismissed while overlooking subclinical physiological burdens/deficits.
Is there is a latent or residual viral problem with covid? i.e. could there be residual viral particles or their proteins residing in the body, such as in nervous tissue (nerve ganglia), similar to EBV, HSV, and others? While I personally find this route unlikely, it may be a worthy research question as prominent MDs are coming forward to attest to the effectiveness of ivermectin, interferon and myoclonal drugs in long covid. Why should these be effective, even marginally, if the pathogen is completely gone?
Is there a major nutrient or cofactor deficiency that was already borderline pre-infection but was pushed into deficit range during infection? Many natural healthcare systems are successfully addressing long-covid right now with notable success rates.
The psychogenic origins of CFS/ME have been mainly debunked in the past 20 years following the rise of more widely available testing technologies to look for subclinical etiologies in these patients. One patient of mine in 2017 had post-influenza malaise lasting 6+ months, followed by CFS/ME for 2 years which was eventually addressed with heavy metal chelation. There seems to be an emphasis in the patient community on treating mitochondrial dysfunction, of which heavy metal chelation may be one component.
CFS/ME, like many chronic illnesses, are multifactoral and often require multifocal treatment. Long covid is only threatening to static models. The reality is that individualized care is successfully managing many of these cases. Unfortunately, the current anti-scientific narrative is preventing the very discussions that could lead to promising research questions. It would be worthwhile to utilize a range of tools rather than corral the medical model (and the public) into one or two modalities that have severely limited outcomes.
So there are currently 1.2 million people in the US with "crippling long covid"? Bed ridden for life?
Where are they?
Have you considered this may be part of the reason that unemployment remains elevated even as job openings are at very high levels. This is despite many states reducing the economic unemployment incentive from the Federal plus up. https://numbernomics.com/unemployment-vs-job-openings-2/
It might very well be contributing. My guess is that it's not a lot of people though. Say 20% of Americans have been infected without a vaccine. That's ~0.4% of the population that couldn't work. Enough to make a dent, but not explain the lion's share?
It's possible I suppose. But again my problem is that there are apparently 1.2 million people crippled and bed ridden in the US. That is a huge number to not be reported on or frankly not even noticed.
The numbers going into the machine are incorrect, so we're getting bad answers out. Most long covid studies have a persistent post viral cough as a symptom...well I suppose the cough my wife got after a bad sore throat in 2019 counts as long covid then. It lasted months.
I suspect the actual number of people with "long covid" will be very much smaller once you take all the normal post viral issues everyone always has after a virus out of the equation. Which will again drop the number of people at risk from debilitating CFS/long covid down to very small numbers. Certainly not 3% of people how catch covid.
Where did you get the number '1.2 million'?
3% of the 41 million cases the US has recorded, so probably lowballing it with the number of unreported/asymptomatic cases. I think someone would have noticed 1.2 million bedridden people, no? Even in countries with smaller populations and much better healthcare systems you don't see these numbers? Sweden should have around 5000 people crippled and bed ridden according to these numbers, I can't find anything to suggest this is the case.
I think the maths Tomas uses to get to 2-3% crippling long covid falls down at the "10% of people who get Covid will get long covid" The definitions used in most studies of "long covid" are so vague as to be useless. One recent study of long covid in children in the UK found that over 50% of the control group (who didn't have covid) reported having all the qualifying symptoms of long covid at the 6 month mark.
So, do you plan to update your article with the latest findings, including how long covid might not be a direct consequence of having covid ?
This study suggest that 66% of their long term COVID subjects (versus 10% control) were positive for Epstein-Barr Virus (EBV, pfeiffer's disease) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8233978/ now the conclusion that this may lead to CFS might be similar, but the chain of events would be different.
Actually, I just has a look at the other study you cite. It finds "At least one of these characteristic symptoms was present in 27•8% (123/442) and 34•8% (123/353) at month 4 and 7 post-infection, respectively". That's starkly different from the 11% figure you cite in the text.
You might want to rewrite this section. As I said in my other post, the UK study is an outlier and criticized for severe methodological issues. Most other studies show a 20 to 30% long covid prevalence rate.
Yes, you're right! Prevalence of Long COVID is higher than ~10%.
But what I'm trying to assess is the probability of long-term CFS. So I need to discount (1) other symptoms that don't correspond to CFS (eg PICS is a huge one), and (2) the CFS-like symptoms that disappear over time. That's what the 10% does.
Then there's again the % of CFS that is crippling. That's what gets it to ~2-3%.
You left out one big issue -- current policies are for everyone to be catch COVID MANY TIMES over their lifetimes, not just once, and despite vaccination.
So we will be rolling that 2-3% dice multiple times.
Even if it becomes a 1.5% dice, that is still quite bad.
But on the other hand, it is quite likely that the dysregulation of the immune system will compound over each subsequent episode so that subsequent episodes will have a higher chance of leading to LongCOVID.
Yes, but in all likelihood if you catch it once, you probably won't develop CFS the next time I would assume. But I don't know. Is there any data on this for other diseases?
Why do you assume that? People die on reinfections, and they get LongCOVID after vaccination. Why would they never get LongCOVID on reinfection?
There is indeed no systematic study of it, primarily because the medical establishment approached the pandemic from the beginning with the blatantly unfounded (given that this is a coronavirus) assumption that immunity will be permanent, so reinfections were first denied, then ignored, and this there have not been nearly enough studies of them.
For the other viruses that cause CFS there are no studies either, because almost nobody who develops CFS knows which virus exactly caused it. And for many of those viruses reinfections does not really apply, as they are either latent (e.g. EBV) or immunity is lifelong and sterilizing.
Also, CFS is distinct from the cellular damage to lungs, hearts, kidneys, brains, etc., and I don't think there is an argument whether that is happening on reinfections with SARS-CoV-2.
Thank you for a very valuable and timely article. One small part could be left out: "As I read somewhere on Twitter², the government says COVID only affects a few children, but I only have a few children. "
If you only have a few children, and only a few children (in the population) are affected, then your chance of being affected is (a few) squared.
:)
The chance is the same because it's an intensive metric.
But the quote is not math. The quote means "the likelihood might be small, but if you're the one who has the bad luck of having your kid suffer from it, your life will be destroyed."
It is not math but is logically ambiguous. Adding what it means as you said would be clear. Otherwise one can say it means my few children are unlikely to be among the few that got long covid.