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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Re: footnote 2, here's the one I saw: https://twitter.com/AshleySWeitz/status/1434581862110797827?s=20
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.
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?
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.
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.
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.