I have one quibble with this post. You said, "For the vast majority of people, we don’t think symptoms will last forever. In other post-viral syndromes, the majority of people eventually recover and are able resume their lives."
There is a lot of overlap between ME and Long COVID. As someone who's 35+ years into ME and who knows many people who are 20+ years into it, I cannot understand why anyone thinks Long COVID symptoms won't last forever. Recovering from ME is unusual. Most of us claw our way up to a point where we can resume some activities, but the ME does not go away and our capacity is diminished from what it should be. I am the highest functioning ME patient I've ever come across. At my best, I got to about 80%. I'm not there any more. Some of us are housebound or bedbound for the rest of our lives. A few of us die of ME.
If you prefer to ignore ME as a parallel (and it is indeed not a perfect parallel), we can look at the brain injuries so clearly documented by the UK biobank brain scan study and see that recovery from that damage is unlikely. Partial reclamation of some function, yes, as cells that are damaged but not destroyed rebound. Recovery, no.
So it's nice to believe that most Long COVID patients will eventually recover enough to resume a more or less normal life, but what evidence we have strongly suggests reality will not be that nice.
Aside from that... Thank you so very much for all the work and thought you put into these posts. I do appreciate your willingness to share your knowledge & expertise, and don't want this comment to cause you to think I don't.
I believe you that you and many people you know have had ME for decades and have never fully recovered. However, it may be that you are in a social network that attracts a lot of people who have the awful, long-lasting version of ME. And there's nothing wrong with seeking out a network for people who are up against the same thing you are. But it can give you an unrealistic version of what the typical course is for your illness.
25 years ago I had what I'm pretty sure was a post-viral syndrome following a respiratory illness with fever. Illness itself was not big deal, but I just sort of never fully recovered. For several years I had exhaustion (slept 10 hours per night and still craved naps all day), muscle aches, several very sore joints, frequent headaches, and could not tolerate even mild exercise because it made me feel sick. Doctor tested me for everything we could think of, and results came back normal. Symptoms waxed and waned, never fully going away, for several years --then faded away and never came back. I have heard stories like mine from quite a few people. If my symptoms had gone on longer I probably would have sought out groups and organizations for people with similar health problems -- but my symptoms faded away before I reached the point of doing that. There are probably a lot of people whose story is more like mine, and they will be under-represented in groups for people with longstanding ME. They'll either never join, or leave once they get better.
As a family doc I thank you for this rather comprehensive and easily understood, well cited review. However, I support the perspective of some other comments below that it is now obvious that long covid is equivalent to the mysteries of "chronic fatigue," "Chronic Epstein Barr," "ME." etc. As a rather traditional (I mean not 'complimentary medicine' type) allopathic family doc, I have seen goodly number of these patients over the years. Obviously many consults did not come up with actionable pathologies and often, unfortunately resulted in advice to see a psychiatrist. We can now clump all these cases into a "post viral syndrome." There is now a large cohort of patients which will help researchers elucidate pathophysiology.
I would humbly suggest that when you (or we) consider possible causes we look beyond (1) organ damage and (2) abnormal immune response (which seems to be the fad of the day) to (3)
an, as yet, undetermined mechanism (in medical history think of anaerobic bacteria, coronary artery occlusion, H. Pylorei, HPV and abnormal PAPs - all obscure in their times) which will give us new insight into human vulnerabilities and viral harms.
thanks for this comment. i appreciate your third point of recognizing unknown unknowns. for the long covid kid post later this week you’ll see some new research i reference about the gut impact. just a reminder to keep digging
I was one of those patients, starting as a kid. I had allergies and asthma, and some other oddities that seemed so unremarkable at the time they were excluded as medically irrelevant. I found it odd that, for me, the teenage blues meant unexplained physical symptoms, including persistent sore throat, but I was an agreeable sort, and went along with "perhaps it's psychosomatic" speculation until that speculation hatched some truly absurd results midway through college. Fast-forward to my childbearing years, and a nurse friend mentions, have I ever been screened for Ehlers-Danlos Syndrome (EDS)? No. Beighton screening, which is low-tech and cheap, is often overlooked because EDS is assumed to be so rare. Guess what...
If your practice already does Beighton screening on people — particularly teens (at a sweet spot age between false positives and negatives) — with unexplained malaise, I commend you! If not, it *is* easy and cheap! If EDS is as rare as supposed, EDS won't explain many such cases. But knowledge is power and it sucks to discover EDS only after considerable orthopedic attrition, not to mention attrition of trust between doctors and patient.
I've heard that dysautonomia is common in "these patients", both for post-infectious conditions, like long COVID, and conditions like EDS:
Between EDS and asthma, I don't bounce back from infection quickly. I've luckily avoided long COVID, but had long something after a series of infections in 2019. (The postviral vertigo is now almost gone — yay!). Others with EDS have autonomic symptoms far worse than mine. Pocinki notes,
"Autonomic symptoms can be easily mistaken for symptoms of psychiatric conditions, especially anxiety, panic, and ADD, and at times even hypomania" (in a presentation on EDS dysautonomia, but may apply to all dysautonomia)
Tinkle has words on chronic fatigue, in the context of its coincidence with EDS, that may sound familiar — might dysautonomia be a common culprit both post-infectiously and for conditions like EDS?
Thank you for your extended discussion and the references and your personal story. Thank God for your resilience. I must admit that with all my interest and attention I had never come across the relationship between EDS and dysautonomia or fatigue. The relation between covid-19 and dysautonomia may provide an important clue for understanding long covid.
Thank you so much. Long Covid is so important to discuss. You didn’t mention ME/CFS which for many is parallel to their Long Covid experience. Given the reality of ME/CFS the statement that most people recover from post-viral illness seems overly rosy.
You do a wonderful, awesome job. As a generalist clinician with 50 years experience under my belt I have seen diagnostic fads come and go, not to mention real progress and insights. The whole area of the gut microbiome is a good example.
"Chronic fatigue" in otherwise high functioning patients without any other evident pathologies has been a very frustrating clinical problem. The medical establishment will now be motivated to take a good look at this problem.
Thank you very much for this. What is missing from your first graphic depiction is the long term medical consequences not yet seen. You may be planning to address this in your future parts of this series. We'll need to consider diseases/conditions we know that other common viruses impact and/or things we've learned Covid specifically impacts: cancer (HepB, HepC, HTLV1, EBV), mental health and schizophrenia (other viral illnesses), Diabetes 1 specifically in Covid, MS and EBV...etc. Slightly different but related (figuring out personal risk of infection) I have been unable to figure out the case numbers and percent of population at risk of infection in a usual year of influenza. I feel this aspect of trying to figure out how to compare Covid with other illnesses is missing from the public discussion.
I have one quibble with this post. You said, "For the vast majority of people, we don’t think symptoms will last forever. In other post-viral syndromes, the majority of people eventually recover and are able resume their lives."
There is a lot of overlap between ME and Long COVID. As someone who's 35+ years into ME and who knows many people who are 20+ years into it, I cannot understand why anyone thinks Long COVID symptoms won't last forever. Recovering from ME is unusual. Most of us claw our way up to a point where we can resume some activities, but the ME does not go away and our capacity is diminished from what it should be. I am the highest functioning ME patient I've ever come across. At my best, I got to about 80%. I'm not there any more. Some of us are housebound or bedbound for the rest of our lives. A few of us die of ME.
If you prefer to ignore ME as a parallel (and it is indeed not a perfect parallel), we can look at the brain injuries so clearly documented by the UK biobank brain scan study and see that recovery from that damage is unlikely. Partial reclamation of some function, yes, as cells that are damaged but not destroyed rebound. Recovery, no.
So it's nice to believe that most Long COVID patients will eventually recover enough to resume a more or less normal life, but what evidence we have strongly suggests reality will not be that nice.
Aside from that... Thank you so very much for all the work and thought you put into these posts. I do appreciate your willingness to share your knowledge & expertise, and don't want this comment to cause you to think I don't.
I believe you that you and many people you know have had ME for decades and have never fully recovered. However, it may be that you are in a social network that attracts a lot of people who have the awful, long-lasting version of ME. And there's nothing wrong with seeking out a network for people who are up against the same thing you are. But it can give you an unrealistic version of what the typical course is for your illness.
25 years ago I had what I'm pretty sure was a post-viral syndrome following a respiratory illness with fever. Illness itself was not big deal, but I just sort of never fully recovered. For several years I had exhaustion (slept 10 hours per night and still craved naps all day), muscle aches, several very sore joints, frequent headaches, and could not tolerate even mild exercise because it made me feel sick. Doctor tested me for everything we could think of, and results came back normal. Symptoms waxed and waned, never fully going away, for several years --then faded away and never came back. I have heard stories like mine from quite a few people. If my symptoms had gone on longer I probably would have sought out groups and organizations for people with similar health problems -- but my symptoms faded away before I reached the point of doing that. There are probably a lot of people whose story is more like mine, and they will be under-represented in groups for people with longstanding ME. They'll either never join, or leave once they get better.
Just want to thank you for all you are doing...these are great, must-reads that I share within my organization
As a family doc I thank you for this rather comprehensive and easily understood, well cited review. However, I support the perspective of some other comments below that it is now obvious that long covid is equivalent to the mysteries of "chronic fatigue," "Chronic Epstein Barr," "ME." etc. As a rather traditional (I mean not 'complimentary medicine' type) allopathic family doc, I have seen goodly number of these patients over the years. Obviously many consults did not come up with actionable pathologies and often, unfortunately resulted in advice to see a psychiatrist. We can now clump all these cases into a "post viral syndrome." There is now a large cohort of patients which will help researchers elucidate pathophysiology.
I would humbly suggest that when you (or we) consider possible causes we look beyond (1) organ damage and (2) abnormal immune response (which seems to be the fad of the day) to (3)
an, as yet, undetermined mechanism (in medical history think of anaerobic bacteria, coronary artery occlusion, H. Pylorei, HPV and abnormal PAPs - all obscure in their times) which will give us new insight into human vulnerabilities and viral harms.
thanks for this comment. i appreciate your third point of recognizing unknown unknowns. for the long covid kid post later this week you’ll see some new research i reference about the gut impact. just a reminder to keep digging
Hi!
I was one of those patients, starting as a kid. I had allergies and asthma, and some other oddities that seemed so unremarkable at the time they were excluded as medically irrelevant. I found it odd that, for me, the teenage blues meant unexplained physical symptoms, including persistent sore throat, but I was an agreeable sort, and went along with "perhaps it's psychosomatic" speculation until that speculation hatched some truly absurd results midway through college. Fast-forward to my childbearing years, and a nurse friend mentions, have I ever been screened for Ehlers-Danlos Syndrome (EDS)? No. Beighton screening, which is low-tech and cheap, is often overlooked because EDS is assumed to be so rare. Guess what...
If your practice already does Beighton screening on people — particularly teens (at a sweet spot age between false positives and negatives) — with unexplained malaise, I commend you! If not, it *is* easy and cheap! If EDS is as rare as supposed, EDS won't explain many such cases. But knowledge is power and it sucks to discover EDS only after considerable orthopedic attrition, not to mention attrition of trust between doctors and patient.
I've heard that dysautonomia is common in "these patients", both for post-infectious conditions, like long COVID, and conditions like EDS:
https://www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/
Between EDS and asthma, I don't bounce back from infection quickly. I've luckily avoided long COVID, but had long something after a series of infections in 2019. (The postviral vertigo is now almost gone — yay!). Others with EDS have autonomic symptoms far worse than mine. Pocinki notes,
"Autonomic symptoms can be easily mistaken for symptoms of psychiatric conditions, especially anxiety, panic, and ADD, and at times even hypomania" (in a presentation on EDS dysautonomia, but may apply to all dysautonomia)
https://www.ehlers-danlos.com/2013-annual-conference-files/PseudoPsychiatricSymptoms.pdf
Howard Levy has published rigorous standards for Beighton screening:
https://www.ncbi.nlm.nih.gov/books/NBK1279/
Tinkle has words on chronic fatigue, in the context of its coincidence with EDS, that may sound familiar — might dysautonomia be a common culprit both post-infectiously and for conditions like EDS?
https://ehlers-danlos.com/2014-annual-conference-files/Brad%20Tinkle.pdf
Thank you for your extended discussion and the references and your personal story. Thank God for your resilience. I must admit that with all my interest and attention I had never come across the relationship between EDS and dysautonomia or fatigue. The relation between covid-19 and dysautonomia may provide an important clue for understanding long covid.
This makes me wonder if part of the reason employers are having a hard time finding workers is because so many have long Covid or have died.
Thank you so much. Long Covid is so important to discuss. You didn’t mention ME/CFS which for many is parallel to their Long Covid experience. Given the reality of ME/CFS the statement that most people recover from post-viral illness seems overly rosy.
You do a wonderful, awesome job. As a generalist clinician with 50 years experience under my belt I have seen diagnostic fads come and go, not to mention real progress and insights. The whole area of the gut microbiome is a good example.
"Chronic fatigue" in otherwise high functioning patients without any other evident pathologies has been a very frustrating clinical problem. The medical establishment will now be motivated to take a good look at this problem.
We should open to any heuristic hypothesis.
This is the series I've been waiting for! Thanks for your work on it. Great so far.
Thank you very much for this. What is missing from your first graphic depiction is the long term medical consequences not yet seen. You may be planning to address this in your future parts of this series. We'll need to consider diseases/conditions we know that other common viruses impact and/or things we've learned Covid specifically impacts: cancer (HepB, HepC, HTLV1, EBV), mental health and schizophrenia (other viral illnesses), Diabetes 1 specifically in Covid, MS and EBV...etc. Slightly different but related (figuring out personal risk of infection) I have been unable to figure out the case numbers and percent of population at risk of infection in a usual year of influenza. I feel this aspect of trying to figure out how to compare Covid with other illnesses is missing from the public discussion.