Dr Topol, I am so grateful for your dedication to help address the suffering of people with long covid and ways to reduce its future incidence. This collection of crucial information surrounding long covid is invaluable.
According to Dr. Vinay Prasad on his recent substack post, a colleague said to him, "“These people (those who are still taking precautions such as masking) are wrong and delusional. They are out of touch with reality. Normal people don’t care about COVID anymore. They have forgotten. The more you talk about it, the more you validate that it is something worth talking about. We shouldn’t test for it, or do anything about it. Long COVID is functioning primarily to earn hospitals money from their dubious clinics. The best thing we can do is to move on with life.” I think there are quite a few doctors who think this way, but I'm not sure of the percentage. I hope this data will change their minds, but I doubt it, as minds are never easily changed. Keep up the good work and I hope they find a cure for ALL post-viral syndromes.
First of all don't read Vinay Prasad. He is a partisan from the little I've read of his Substack, prone to flamethrowing, and I would assume he has done much harm. Eric Topol on the other hand has presented the most cutting edge and prescient science with a brave sort of caution and beneficence despite the kind of hostility directed towards straight shooting scientists these days. Although he has not performed all the studies himself (ha!), I give Dr. Topol credit as this nation's foremost Covid-ologist!
Thank you Eric!
And I must say that learning the complement cascade and a million other things during medical school was a task for a younger brain. I'm trying to protect my own from as many rolls of the Covid dice as I can, while capitulating only as much as I must to maintain core friendships and family. This does not include flying maskless in planes without the latest vaccination to please potentially judgmental strangers.
Hoping for a nasal spray vaccine soon as another possibly effective arrow in the quiver against both infection and Long Covid. I'm trying to help my patients with long Covid, and can testify to the life-altering severity this can manifest even in young, otherwise healthy individuals. I don't like the Parkinson's news at all.
I decided to keep this comment separate from the one below about Dr. Prasad. I've subscribed to the "Sensible Medicine" Substack for quite awhile. I admire one doc there in particular, Adam Cifu, who has always seemed both reasonable and empathic. Then he recently wrote this about his current feelings about Covid: "My inability to achieve equanimity with COVID affects me. Rather than assuming the person wearing a mask is getting over a cold or suffers with a serious medical condition, I reflexively think they belong to the group who cling to an irrational fear of the virus. If I reside too far to one side... I imagine the masked live too far on the other side. Given my work, I interact with this group weekly. Those who remain paralyzed by fear of the virus. I struggle to deal productively with their panic, worry, dread and inability to return to a life in a world that will exist from here on out. As someone who strives to live by the mantra “live and let live,” my difficulty to attain this ethos with the COVID-worried is a failing. I also see it as a failing of medicine, how we failed to educate these people, how we fomented anxiety." So now I wonder am I being irrational because I wear a mask inside in public when infection is at high levels in my community? (I don't want Long Covid, but I worry more about my husband, who is on an immune suppressing drug). So now I wonder how many docs look at me in this way if I go into a clinic wearing a mask, and I feel a need to explain why I'm wearing it. UGH! :(
I was tempted to take your advice not to read Prasad's latest, but curiosity got the better of me. You're right -- his recent Substack post represents magical thinking at its worst: stop talking about Covid and we'll be better off. In particular, his claim that long Covid is "overblown" flies in the face of the research highlighted by Dr. Topol here. Sadly, Prasad's opinions give license to millions who are moving on from vaccines and other measures.
I can't help but think he writes this stuff for public consumption solely to attract attention to himself, because his publications are, for the most part, far more nuanced.
Wow - you're on the front lines! Thanks for what you do, and for your perspective. You might think Dr. Prasad is a conservative, but I started listening to him on the VPZD podcast starting in the early days of Covid, and he's actually very liberal (like Bernie Sanders liberal). He's no longer on the podcast; maybe Dr. ZD got tired of his rants, albeit done with humor, and has moved on to spirituality. Prasad's beef at the time was the disproportionate harm being done to low income folks, both because they were disproportionately "front line" workers expected to remain on the job, and also poor kids didn't have parents with the ability to pay for tutoring, etc. and they needed schools the most. He's always advocated for more rigorous studies on masks, but he didn't push back against infectious disease doc Monica Gandhi when she advocated for well fitting N-95's when she was a guest on the podcast during Covid. He's always been pro-vaccine, and has written articles disputing Robert Kennedy Jr. and Robert Malone. He was a flame thrower even before Covid, and he wrote a book "Malignant: How Bad Policy and Bad Evidence Harm People with Cancer." I think he's highly respected in his area of oncology. He's got an admirable history of pointing out when approved drugs offer little to no benefit and/or are harmful, and with his training in biostatistics, can really pick apart poorly done studies. I don't agree with him on everything, but it's mainly his style that rubs me the wrong way. So I was very disappointed when he gave a platform to the colleague who is dismissive of Long Covid. I'm surprised he thinks we should just ignore Covid when so many people, especially older folks, are dying. I wish he would be as compassionate about the aged as he is the poor. Ironically, his employer, UCSF, recently did an excellent Grand Rounds on Long Covid (link below). Perhaps he ought to spend a day in their Long Covid clinic.
Thanks for your thoughts. So I just went over to his substack and was greeted with this paragraph full of shite:
“ Having said that, its important to remember that it was likely a lab leak, masks don’t work, mandates didn’t work, vaccines were not needed in people who had COVID, nor children, closing school was a human rights violation, masking kids didn’t work, vaccine mandates were unethical, vaccine passports were useless, boosters don’t have good data, paxlovid doesn’t have good data, long COVID is overblown, etc.. These are obvious things to those of us who can read. The CDC lied repeatedly, and all the employees at CDC and AAP who told us to cloth mask 2 year olds should be fired for stupidity.”
It’s awful. He makes no clear distinction between masks and respirators, and his proclamations are based on all or nothing dualities, often dripping with self righteousness and disdain. I really do try not to read his posts, and they are only relevant because his audience makes them so. Read through some of the comments, too, and you’ll see the vitriol he cooks up among angry readers. There was one about kids wearing masks that generated some real homicidal fantasies for commenters.
I read that, too. Definitely one of his less nuanced articles! He doesn't write that way in his journal articles. He appears to be getting more extreme and angry over time, and I wonder if it's because of audience capture. I don't read him that much these days, nor the comments in his articles, because I don't see the point, but some of his posts from his substack get cross posted to Sensible Medicine, including the one I wrote about. I only read it because he was asking readers for comments about what they thought about whether he should stop writing about Covid. He has said in the past that he doesn't read comments but supposedly he read those since he asked for them. I wonder if he really wanted any constructive feedback, or just more positive reinforcement for his angry rants. I have told him via comments on numerous occasions that his style is ineffective if his goal is to persuade. But perhaps persuasion is not his goal.
Very astute comment, and I totally agree. There is a natural tendency to change our writing and voices based on “audience capture” and “likes.” No one wants to be shouting into the void, and having followers of your unique persona feels good… but there are countless examples where this feedback loop leads people astray, and they splinter off into increasingly calcified new tribes. And when tribes form, especially in scientific realms supposedly immune to that stuff, we get angry absolutists.
Thank you, Dr Topol. I am genuinely grateful as I read your long-covid article. I am one of those with long covid and went through most of the prevalent, discussed symptoms as well as endured through the distrusts by my PCP & some HCP of making things up as I recovered.
I was saying back in 2020 that in my own opinion Covid was a vascular disease rather than a long disease, and had the capability to colonize the body via the endothelial tissues. Maybe there was some truth to that theory. I'm now in my fourth year from infection and still hosting some lingering symptoms.. most have weakened but occasionally flare up again. Some however have never moderated. None were present pre-covid. The brain aging news is alarming since one of my two lingering symptoms involve parkinsonian symptoms.
I appreciate your remarks Alex. The more data we have- even from personal narratives which I admit can be a bit too subjective and perhaps biased toward the "woe-is-me" side -the more data the better. People providing personal narratives should keep in the forefront of their writing the importance of not assuming correlation implies causation.
It seems like we need to start formally carving long Covid into distinct categories defined not only by symptoms but also by evolving biomarkers and syndrome phenotypes. Much as cancers are now classified by TNM, histological, and biomarker profiles. Each is a slightly different disease within their umbrella, and therefore can present different targets for treatment. It’s one of the promises of individualized immunotherapies for cancer based on each unique phenotype and genotype… at least that’s how the future contours might look to me from primary care.
Dr Topol, Your articles are invaluable! Permit me a logical extension for LC. Apparently, LC is now associated with severity of disease. If this is so, doesn't it make sense to treat active C19 infections with 10 days of paxlovid and not 5 days? Thank you for all you do!
There 's now some mixed data on Paxlovid protection vs Long Covid and we don't know if longer Rx will make the benefit more clearcut. While severity of Covid is important, the vast number of cases of LC are after mild to moderate, and in younger people, who frequently don't even consider taking Paxlovid.
Thank you for an understandable explanation. Listened to the Congressional hearing and am heartened by the attention LC received (but why did it take so long?). Concerned that this will become a money problem when there really is no such thing as a shortage of funds. Shortage of researchers? perhaps. Doctors to treat? Probably. Medical educators? Infrastructure to perform studies? These are the real resources we should be focused on and funding to get more of if we need them. Don't fall for money being a problem; it's the easy part.
Those of us who have suffered with chronic Lyme have also had many issues after having ( much guessing ) long Covid. Nervous system issues keep the nightmare going.
Any interest in helping those afflicted with both?
We are here to be studied. The journey with Chronic Lyme has been a 39 year nightmare....
I have a mutation in Complement component 3 that prevents the alternative pathway from shutting off (similar to a CFH mutation but presents some additional issues). I had severe post-concussion syndrome after a head injury and had very similar symptoms with acute SARS-CoV-2. I'm almost 4 years now with long COVID and have always felt my complement mutation was likely involved. I emailed Apellis pharmaceuticals to try to get a trial going for pegcetacoplan for both acute and Long COVID. I think they were investigating acute cases but not long COVID.
Eric – thanks for this great post. 43 y/o San Diegan here suffering from LC for 19 months now. Formerly one of better 40+ y/o athletes in nation and successful finance job. Currently out of work due to host of disabling cognitive and physical symptoms and been self-managing thru pacing, stress reduction, diet and nervous system regulation practices. I’m also a Scripps patient (though I have found zero answers from doctors) and live in the area if you or someone you know ever need a volunteer for LC potential trials. Lastly, my chief lingering symptom is somatosensory/tactile – all touch on skin is different and mostly uncomfortable/rough…even seeing movement/friction or hearing things (a bit “static” y). Curious if based on your research you think this is from damage to the skin system/organ and processing of touch or if this is more of a neurological/brain misfiring issue. Quite debilitating and don’t run across it in any LC forums/research. Thanks again for this great research and all the links…though still a bit unclear for LC sufferers what best path forward is beyond what I’m doing:)
Dr Topol, I am so grateful for your dedication to help address the suffering of people with long covid and ways to reduce its future incidence. This collection of crucial information surrounding long covid is invaluable.
Much appreciated. Janet. It's notes like yours that keep me going!
According to Dr. Vinay Prasad on his recent substack post, a colleague said to him, "“These people (those who are still taking precautions such as masking) are wrong and delusional. They are out of touch with reality. Normal people don’t care about COVID anymore. They have forgotten. The more you talk about it, the more you validate that it is something worth talking about. We shouldn’t test for it, or do anything about it. Long COVID is functioning primarily to earn hospitals money from their dubious clinics. The best thing we can do is to move on with life.” I think there are quite a few doctors who think this way, but I'm not sure of the percentage. I hope this data will change their minds, but I doubt it, as minds are never easily changed. Keep up the good work and I hope they find a cure for ALL post-viral syndromes.
First of all don't read Vinay Prasad. He is a partisan from the little I've read of his Substack, prone to flamethrowing, and I would assume he has done much harm. Eric Topol on the other hand has presented the most cutting edge and prescient science with a brave sort of caution and beneficence despite the kind of hostility directed towards straight shooting scientists these days. Although he has not performed all the studies himself (ha!), I give Dr. Topol credit as this nation's foremost Covid-ologist!
Thank you Eric!
And I must say that learning the complement cascade and a million other things during medical school was a task for a younger brain. I'm trying to protect my own from as many rolls of the Covid dice as I can, while capitulating only as much as I must to maintain core friendships and family. This does not include flying maskless in planes without the latest vaccination to please potentially judgmental strangers.
Hoping for a nasal spray vaccine soon as another possibly effective arrow in the quiver against both infection and Long Covid. I'm trying to help my patients with long Covid, and can testify to the life-altering severity this can manifest even in young, otherwise healthy individuals. I don't like the Parkinson's news at all.
I decided to keep this comment separate from the one below about Dr. Prasad. I've subscribed to the "Sensible Medicine" Substack for quite awhile. I admire one doc there in particular, Adam Cifu, who has always seemed both reasonable and empathic. Then he recently wrote this about his current feelings about Covid: "My inability to achieve equanimity with COVID affects me. Rather than assuming the person wearing a mask is getting over a cold or suffers with a serious medical condition, I reflexively think they belong to the group who cling to an irrational fear of the virus. If I reside too far to one side... I imagine the masked live too far on the other side. Given my work, I interact with this group weekly. Those who remain paralyzed by fear of the virus. I struggle to deal productively with their panic, worry, dread and inability to return to a life in a world that will exist from here on out. As someone who strives to live by the mantra “live and let live,” my difficulty to attain this ethos with the COVID-worried is a failing. I also see it as a failing of medicine, how we failed to educate these people, how we fomented anxiety." So now I wonder am I being irrational because I wear a mask inside in public when infection is at high levels in my community? (I don't want Long Covid, but I worry more about my husband, who is on an immune suppressing drug). So now I wonder how many docs look at me in this way if I go into a clinic wearing a mask, and I feel a need to explain why I'm wearing it. UGH! :(
https://www.sensible-med.com/p/i-still-cant-be-rational-about-covid
I was tempted to take your advice not to read Prasad's latest, but curiosity got the better of me. You're right -- his recent Substack post represents magical thinking at its worst: stop talking about Covid and we'll be better off. In particular, his claim that long Covid is "overblown" flies in the face of the research highlighted by Dr. Topol here. Sadly, Prasad's opinions give license to millions who are moving on from vaccines and other measures.
I can't help but think he writes this stuff for public consumption solely to attract attention to himself, because his publications are, for the most part, far more nuanced.
Wow - you're on the front lines! Thanks for what you do, and for your perspective. You might think Dr. Prasad is a conservative, but I started listening to him on the VPZD podcast starting in the early days of Covid, and he's actually very liberal (like Bernie Sanders liberal). He's no longer on the podcast; maybe Dr. ZD got tired of his rants, albeit done with humor, and has moved on to spirituality. Prasad's beef at the time was the disproportionate harm being done to low income folks, both because they were disproportionately "front line" workers expected to remain on the job, and also poor kids didn't have parents with the ability to pay for tutoring, etc. and they needed schools the most. He's always advocated for more rigorous studies on masks, but he didn't push back against infectious disease doc Monica Gandhi when she advocated for well fitting N-95's when she was a guest on the podcast during Covid. He's always been pro-vaccine, and has written articles disputing Robert Kennedy Jr. and Robert Malone. He was a flame thrower even before Covid, and he wrote a book "Malignant: How Bad Policy and Bad Evidence Harm People with Cancer." I think he's highly respected in his area of oncology. He's got an admirable history of pointing out when approved drugs offer little to no benefit and/or are harmful, and with his training in biostatistics, can really pick apart poorly done studies. I don't agree with him on everything, but it's mainly his style that rubs me the wrong way. So I was very disappointed when he gave a platform to the colleague who is dismissive of Long Covid. I'm surprised he thinks we should just ignore Covid when so many people, especially older folks, are dying. I wish he would be as compassionate about the aged as he is the poor. Ironically, his employer, UCSF, recently did an excellent Grand Rounds on Long Covid (link below). Perhaps he ought to spend a day in their Long Covid clinic.
https://www.youtube.com/watch?v=rMt6ZV-hHSE
Thanks for your thoughts. So I just went over to his substack and was greeted with this paragraph full of shite:
“ Having said that, its important to remember that it was likely a lab leak, masks don’t work, mandates didn’t work, vaccines were not needed in people who had COVID, nor children, closing school was a human rights violation, masking kids didn’t work, vaccine mandates were unethical, vaccine passports were useless, boosters don’t have good data, paxlovid doesn’t have good data, long COVID is overblown, etc.. These are obvious things to those of us who can read. The CDC lied repeatedly, and all the employees at CDC and AAP who told us to cloth mask 2 year olds should be fired for stupidity.”
It’s awful. He makes no clear distinction between masks and respirators, and his proclamations are based on all or nothing dualities, often dripping with self righteousness and disdain. I really do try not to read his posts, and they are only relevant because his audience makes them so. Read through some of the comments, too, and you’ll see the vitriol he cooks up among angry readers. There was one about kids wearing masks that generated some real homicidal fantasies for commenters.
I read that, too. Definitely one of his less nuanced articles! He doesn't write that way in his journal articles. He appears to be getting more extreme and angry over time, and I wonder if it's because of audience capture. I don't read him that much these days, nor the comments in his articles, because I don't see the point, but some of his posts from his substack get cross posted to Sensible Medicine, including the one I wrote about. I only read it because he was asking readers for comments about what they thought about whether he should stop writing about Covid. He has said in the past that he doesn't read comments but supposedly he read those since he asked for them. I wonder if he really wanted any constructive feedback, or just more positive reinforcement for his angry rants. I have told him via comments on numerous occasions that his style is ineffective if his goal is to persuade. But perhaps persuasion is not his goal.
Very astute comment, and I totally agree. There is a natural tendency to change our writing and voices based on “audience capture” and “likes.” No one wants to be shouting into the void, and having followers of your unique persona feels good… but there are countless examples where this feedback loop leads people astray, and they splinter off into increasingly calcified new tribes. And when tribes form, especially in scientific realms supposedly immune to that stuff, we get angry absolutists.
Thank you, Dr Topol. I am genuinely grateful as I read your long-covid article. I am one of those with long covid and went through most of the prevalent, discussed symptoms as well as endured through the distrusts by my PCP & some HCP of making things up as I recovered.
Happy 100th Anniversary!
I was saying back in 2020 that in my own opinion Covid was a vascular disease rather than a long disease, and had the capability to colonize the body via the endothelial tissues. Maybe there was some truth to that theory. I'm now in my fourth year from infection and still hosting some lingering symptoms.. most have weakened but occasionally flare up again. Some however have never moderated. None were present pre-covid. The brain aging news is alarming since one of my two lingering symptoms involve parkinsonian symptoms.
Thanks for weighing and sorry you are still experiencing some flares. Agree about the concerns on neurologic sequelae.
You might be interested in what Dr. Ziyad Al-Aly, one of the top LC researchers, has to say about endothelial tissues in this brief video:
https://www.medpagetoday.com/opinion/faustfiles/108333?xid=nl_mpt_DHE_2024-01-19&eun=g2093479d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily Headlines Evening 2024-01-19&utm_term=NL_Daily_DHE_dual-gmail-definition
Thank you!
You're very welcome. I wish you the best in your recovery!
I haven't run into anyone who discussed long covid candidly on a personal level. Thank you for the authenticity.
I appreciate your remarks Alex. The more data we have- even from personal narratives which I admit can be a bit too subjective and perhaps biased toward the "woe-is-me" side -the more data the better. People providing personal narratives should keep in the forefront of their writing the importance of not assuming correlation implies causation.
One more comment!
It seems like we need to start formally carving long Covid into distinct categories defined not only by symptoms but also by evolving biomarkers and syndrome phenotypes. Much as cancers are now classified by TNM, histological, and biomarker profiles. Each is a slightly different disease within their umbrella, and therefore can present different targets for treatment. It’s one of the promises of individualized immunotherapies for cancer based on each unique phenotype and genotype… at least that’s how the future contours might look to me from primary care.
Agree Ryan
Yes, that's what Ziyad Al-Aly, top LC researcher, said in this video:
https://www.medpagetoday.com/opinion/faustfiles/108333?xid=nl_mpt_DHE_2024-01-19&eun=g2093479d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily Headlines Evening 2024-01-19&utm_term=NL_Daily_DHE_dual-gmail-definition
Dr Topol, Your articles are invaluable! Permit me a logical extension for LC. Apparently, LC is now associated with severity of disease. If this is so, doesn't it make sense to treat active C19 infections with 10 days of paxlovid and not 5 days? Thank you for all you do!
Thanks Steven.
There 's now some mixed data on Paxlovid protection vs Long Covid and we don't know if longer Rx will make the benefit more clearcut. While severity of Covid is important, the vast number of cases of LC are after mild to moderate, and in younger people, who frequently don't even consider taking Paxlovid.
Thank you for an understandable explanation. Listened to the Congressional hearing and am heartened by the attention LC received (but why did it take so long?). Concerned that this will become a money problem when there really is no such thing as a shortage of funds. Shortage of researchers? perhaps. Doctors to treat? Probably. Medical educators? Infrastructure to perform studies? These are the real resources we should be focused on and funding to get more of if we need them. Don't fall for money being a problem; it's the easy part.
Ty for this. Again, the complement system. That explains everything! Where all the bad stuff begins.
Those of us who have suffered with chronic Lyme have also had many issues after having ( much guessing ) long Covid. Nervous system issues keep the nightmare going.
Any interest in helping those afflicted with both?
We are here to be studied. The journey with Chronic Lyme has been a 39 year nightmare....
I have a mutation in Complement component 3 that prevents the alternative pathway from shutting off (similar to a CFH mutation but presents some additional issues). I had severe post-concussion syndrome after a head injury and had very similar symptoms with acute SARS-CoV-2. I'm almost 4 years now with long COVID and have always felt my complement mutation was likely involved. I emailed Apellis pharmaceuticals to try to get a trial going for pegcetacoplan for both acute and Long COVID. I think they were investigating acute cases but not long COVID.
Eric – thanks for this great post. 43 y/o San Diegan here suffering from LC for 19 months now. Formerly one of better 40+ y/o athletes in nation and successful finance job. Currently out of work due to host of disabling cognitive and physical symptoms and been self-managing thru pacing, stress reduction, diet and nervous system regulation practices. I’m also a Scripps patient (though I have found zero answers from doctors) and live in the area if you or someone you know ever need a volunteer for LC potential trials. Lastly, my chief lingering symptom is somatosensory/tactile – all touch on skin is different and mostly uncomfortable/rough…even seeing movement/friction or hearing things (a bit “static” y). Curious if based on your research you think this is from damage to the skin system/organ and processing of touch or if this is more of a neurological/brain misfiring issue. Quite debilitating and don’t run across it in any LC forums/research. Thanks again for this great research and all the links…though still a bit unclear for LC sufferers what best path forward is beyond what I’m doing:)
Congrats Dr. Topol on the 100th anniversary of Scripps Research!!
Cheers! Shannon Dickson