Having seen hundreds (if not thousands) of individuals with severe covid in the hospital, I have perhaps a different take. Early in the pandemic, up to 15% of COVID19 sufferers were admitted to hospitals. As therapies improved (steroids, then monoclonal antibodies), and outpatient oxygen became more available, that percentage certainly declined, though the hospitalization number increased wave-by-wave here in Tennessee. It declined further of course after vaccinations and/or prior infections became commonplace. That said, it was a huge number of people.
And *most* of them had persistent symptoms >4-6 weeks after their illness.
Viral pneumonia/ARDS wrecks the lungs. It leaves scars. (Severe cases of pneumonia from other pathogens do as well, of course)
Covid-19 wrecks the brain. The average person hospitalized with covid, according to UK researchers, loses 5-7 IQ points. If ICU, 10-15. I can’t count how many elderly patients I admitted in ‘20 who started with mild cognitive impairment, but were discharged with severe dementia.
Blood clots, myocarditis, acute liver or pancreatic injury; all of those acute manifestations may have long term consequences.
We had great success in improving outcomes throughout the pandemic. But there was a lot of trial and error on the way. Among survivors of covid-19 from 2020? *Way* more than 1% were physically damaged permanently. Maybe it was even as high as the lower bar 10% figure. There were certainly many more who never got admitted whose symptoms were severe enough to forbid work, and which persisted a long time. I know quite a few healthcare providers in that group. Maybe half again as many? An additional 5%? Like you, the 30% figure seems absurd to me too.
Even among 2020 survivors.
The covid experience is entirely different now, with a mostly-partially-immune population. <5% of covid cases get hospitalized now, and despite their typically advanced ages, they’re not nearly *as sick*. Considering that vastly more Americans got covid in ‘21 and ‘22, and the prevalence of long term injury dropped so greatly (I will not comment here upon my Southeast USA Delta variant experience last summer…), that 10-15% has been diluted out such that I’m sure long covid now is <5% of the total.
Thanks! Your lived experience is a great example of that different sense different physicians get when they hear studies. Everyone you see w/ covid, if you are a hospitalist, is sick enough to be in the hospital! None of my patients have gotten sick enough with covid to be admitted. It changes our "eye test", for sure, when seeing studies finding 10+% rates of long COVID -- understandably it would get a head nod from you, and a "I need to write an article about this bs" from me!
When Wuhan/alpha/delta were wrecking people's lungs and causing much more invasive disease, I think it makes sense there was a much, much higher rate of "long-tail" COVID, esp when long COVID studies incorporated a lot of severely ill patients. I totally buy very high rates of persistent post-viral symptoms in this cohort esp in 2020 through fall 2021. I also suspect it is not a very good predictor of what long COVID rates will be for those infected with Omicron in the past 8 months.
The neurologic/cognitive stuff, esp with hospitalized patients, is pretty scary, at face value. That UK "IQ" study was interesting. On the one hand, some reports implied the testing changes were true before & after tests (see: https://www.webmd.com/lung/news/20210730/study-finds-covid-19-may-lower-intelligence) but I'm pretty sure from the actual study (https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00324-2/fulltext) it's all age/comorbidity adjusted changes in test score for post-covid vs non-covid respondents - which obv has huge potential for confounding. That said, I don't want to sound dismissive about this concern. I am unconvinced by the evidence it's common. But if it is... absolutely terrifying!
Thanks for your work, (I'm sure it helped a lot of folks) and for your comment (even though I am sure your comment is not helping, but merely restating the problem).
You saw "100's if not 1000's?" "Most' of them had persistent symptoms? "Way more" than 1 percent had permanent damage? "Many more" never got admitted. I know I don't have to tell you this is not science. It is scarcely anecdote.
So where is the science? For me, that is the real question. For 30 months we have been urged to follow "The Science." But there doesn't seem to be any. Why not? The answsers to that question range from infuriating to terrifying.
Anybody who publishes on the subject gets to write his own definitions of "long covid?" In what universe does that make sense?
Is a reported death WITH COVID in Bulgaria the same as a reported death WITH COVID in Bolivia? If not it makes no sense to compare them. Is a reported death WITH COVID in Scotland the same as a reported death FROM COVID in Scotland? Then why two prepositions? Despite thousands of stories, miles of screen crawls, hundred of millions of words, I don't know and neither do most of the folks reading this. If you have no control over the language, the definitions of words, you have nothing like science; you have the Tower of Babel.
My experience as a outpatient pediatrician has been the first wave was bad the second worse and since then the ripples have been less and less severe. The advantage I have had is that the majority of my paint did not "qualify" for the vaccine initially , so I am able to observe more "natural history" unaffected by vaccines . Most of my patients have had mild disease, the few that have been hospitalized have been the high BMI patients. My asthmatics and even type 1 diabetics have done well.
These are the stats we need to be given so we can educate and advocate for our patients, good luck with your practice
I suspect we are dealing with 3 distinctly different populations. One may represent low grade persistent viremia. The next covid neurologic injury. The last is the group of patients that chronically do not feel well and are looking for a explanation whether it be chronic EB, chronic fatigue, total environmental allergies etc. Ultimately all we have to offer is supportive individualized management requiring deft clinical care which cannot occur if we try to put everyone in the same box. J. Burk Gossom MD
I think there's truth to that -- some combination of patients with certain vulnerabilities (ie overactive immune systems or extensive comorbidities) mixing with different disease courses (ie strong early immune response or weak initial response and severe disease or overwhelmed immune response & end-organ damage) can mix and match to produce a spectrum of symptoms that all end up in the "long COVID" bucket with very different paths and possible treatment approaches.
What percentage of those with long COVID were vaccinated/unvaccinated? I am surprised this was not addressed. Could the overstimulated immune systems have been the result of vaccines?
The article was too long to add another paragraph, but you're right - it's an important point. I've looked at several studies on the subject and they generally find that ppl with vaccines and "breakthrough" infections tend to have a lower rate of long COVID than unvaccinated infected people, in the 15-50% less range. Prone to major confounding, of course. I can say that therefore there does not seem to be any evidence of higher long COVID rates among the vaccinated, and rather it would seem more likely that a "pre-heated" immune response might modestly reduce the risk of either prolonged viral persistence or dysfunctional immune response. How prior infection changes the odds of long covid should be a hot area of interest (I don't think anything has been published yet) as even a 0.5-1% risk of long COVID with every infection would be terrible if we are going to get 10 or 50 infections in our lifetime and the odds stay the same each time!
I have had COVID twice. Latest round in July of 22. This time I am having fatigue and brain fog. complaining of fatigue and muscle weakness, My doctor gave me an anti depressant prescription and sent me on my way. I changed doctors immediately, and asked for a stress test on my heart. I've always been energetic, strong and capable. It's terrifying to feel this way and I tell my wife I feel like I'm going to die. Like stage 4 cancer exhaustion. I'm not sleeping that much but everything is an effort mentally and physically. It's real, it's scary, and it medical community seems completely incapable of acknowledging it. We've had 3 years to study and prepare for this stuff and the only solution was to force an experimental vaccine on us. I'm 51 years old, vaxed and boosted so I didn't lose my job. Much too young to feel this d@#$ old. Our medical system and government have failed to meet the moment.
"It's real, it's scary", indeed. You might need to run through 2-3 doctors before anyone takes you seriously, and another 10 before someone can take the time to try to figure out how to help you. It's unfortunate, but new and/or strange problems are really hard on patients in this country. I imagine at some point one of the centers for long COVID will come out with an algorithmic approach to helping people with your sort of horribly difficult situation; that will help give physicians some tools, at least, to begin to offer suggestions. Most are just overwhelmed. I hope you're "the 60%" who get better.
Thanks for the reply doc. My stress test today shows my heart to be ok. Elevated bp but while testing, I had an interesting conversation with the techs. Kaiser fired a very large number of staff for refusing the vaccine and the staffing shortages are definitely apparent. It helps explain why the level of care and time has significantly dropped over the past couple of years. Add that to larger volume of visits due to contagious strains of COVID and it was makes sense. My wife has had COVID and we have had to fight Kaiser tooth and nail for care. Offering an appointment two weeks out while you're coughing uncontrollably and we ended up in the ER instead. Then they failed to follow up as promise. Then we could only get a phone appointment from an advice nurse. Then another weekend goes by and symptoms continue. It has turned into a bad sinus infection with green phlegm and she can't get antibiotics. It's a bizarre world. We're 52, raised 6 kids. We don't often seek healthcare but are very familiar with treatments and symptoms after raising children. The healthcare in this country is terrible, at least for us in California.
"The results “suggest that physical symptoms persisting 10 to 12 months after the COVID-19 pandemic first wave may be associated more with the belief in having experienced COVID-19 infection than with actually being infected with the SARS-CoV-2 virus,” the authors wrote in JAMA Internal Medicine."
Anxiety disorders are a "big tent" and the diagnosis itself suffers from a bad case of "chicken or egg" syndrome, Rolando.
What's most interesting to me about Doc Hollander's article is his observation and speculative analysis regarding similarities of "long Covid" to chronic fatigue syndrome and similar symptom patterns as reported over time.
Self-reporting of symptoms, for which no objective test has yet been found, are rightly viewed with a certain degree of skepticism and commonly result in mental health referrals.
Here is where we must confront the question; "which came first; the chicken or the egg?"
Symptoms of mysterious origin are not inevitably psychogenic, but distress resulting from the experience of such symptoms, combined with struggling against refusals to explore and diagnose, can and do exacerbate adjustment disorders arising from incapacitation.
One of the most common presenting symptoms of an adjustment disorder is anxiety. In this situation, anxiety is a symptom of dysmorphia with a different origin. By this, I mean that the root cause is not anxiety; when the client learns methods for coping with their disability, the adjustment disorder is thereby treated and anxiety is reduced to manageable levels.
More simply, anxiety is a reasonable and ordinary result of disabilities with unknown origins.
You make a very good point about anxiety disorders, and the challenge is to separate anxiety as a prominent presenting symptom from its origins. This is where mental health practitioners often get things very wrong, treating only the secondary symptom and ignoring or denigrating the root cause and primary disorder.
And no wonder; mental health professionals are entirely reliant on physicians to diagnose underlying physical maladies. The best treatment is that which keeps an open mind throughout. Ultimately, all that can be done is to assist a client with adaptation to reduced capacity. The mistake occurs when an inability to adjust, results in imposition of increasingly invasive or risky series of treatments.
It's a terrible conundrum; is the intractability of the client's primary presenting symptom a sign of a stubborn anxiety disorder, or evidence of an undiagnosed medical root cause?
Perhaps the reason I find Doc Hollander's hypothesis (or speculation, to avoid possibly unwarranted assumption) of chronic inflammation so compelling, is having witnessed one patient's decade-long struggle. When he finally discovered the root cause of his susceptibility to bacterial infection and sudden-onset series of allergic reactions to common foods and medications, his chronic anxiety resolved.
That root cause was never formally diagnosed, but resolution of all symptoms correlated precisely with removal of his unerupted, horizontally-growing impacted wisdom teeth. Following the surgical removal of those teeth, the patient's vestibular symptoms were greatly reduced, his seemingly-endless series of bacterial infections ceased and the frequency of random allergic reactions to formerly well-tolerated substances was reduced to zero.
Correlation does not equal causation, however suggestive it may be. Shall we then ascribe resolution of the patient's multivariate symptoms to a placebo effect? Perhaps, but it may be that we do so, only out of stubbornness.
In support of my urging the maintenance of an open mind, I offer this overview:
The most debilitating and distressing symptom reported by clients presenting with anxiety is not tachycardia, it is dizziness or light-headedness. As the research accumulates, we are faced with the prospect of having to acknowledge the possibility of a historical epidemic of misdiagnosis. Where every effort toward medical diagnosis has been made, that epidemic is understandable and forgivable.
A few decades ago, a psychologist of my acquaintance privately shared his sense of relief about treating clients with anxiety that had previously obtained a medical diagnosis of vestibular or vascular disorder. An honest man, he confessed to uncertainty about anxiety disorder diagnoses of uncertain origin.
It's not easy for the otolaryngologists, either. Meniere's is hardly the only vestibular disorder, nor is BPPV.
So what is a diagnostician to do under such circumstances? Leveraging the placebo effect with a reassuring air of certainty is not an entirely unproductive strategy, as long as it doesn't result in a counterproductive manifestation of hubris.
We assume anxiety an invariable root cause, at great peril to patients and to our own integrity.
I am not a physician but last night I watched a segment on Long Covid on the PBS Weekend News. It had the usual public television presentation of an articulate spokesperson who was said to be suffering from the disorder along with a physician who was researching the problem or at least supposedly compiling statistical data and who spoke of the underrecognized ubiquity of the problem. As a psychotherapist for over 50 years, I have seen medicine's frustration with vague constellations of symptoms with no clear findings on the usual array of medical tests. The insistence that their suffering is real in the face of will-o'-the-wisp findings is invariably as much a political problem as a medical one. Multiple chemical sensitivity syndrome as well as others mentioned by Dr. Hollander come to mind.
I have long covid. Its dreadful. . My guess is that the body just has to heal ( or not) and there is not much medicine can do to help. But my anger is related to this: The damn virus was made in a lab, result of diabolical animal research on gain of function. The research, jointly financed by multiple countries, was done in China surely because sooner or later they need human subjects to infect and they can't get those easily in western countries. This monstrous research needs to stop. Leaks will happen again, its inevitable. It appears there are dozens (?) or scores (?) of labs doing gain of function research and bio weapon research. This is the real cause of the suffering. We need an International treaty to ban it.
I think the biggest problem in defining “long covid” at present comes out of the US CDC’s rather unhelpful definition.
4 weeks of vague symptoms with no specific criteria to pin down the diagnosis?
That’s not a diagnostic criterion, it’s a fishing expedition.
A mild depressive episode that requires no specific medical treatment will easily fall under the criteria you list above, not to mention a wide variety of other medical conditions.
I mean, I wonder if your surveyed everyone with a bad case of the flu, what proportion would have at least some of these symptoms for 4-5 weeks after infection?
I’ve been following the 3 month timeline advised by the WHO and poof! magically most people feel better if you wait a few more weeks after their covid diagnosis as they get back to a normal life.
This isn’t to deny the reality of people with actual long covid. But it’s going to continue causing problems if the media and some medical authorities continue telling people they might have a highly disabling medical condition simply because their viral illness laid them up for 1 month.
I tend to agree, which is why I think somewhere around 2-3 months is a better cut-off. It's also enough time to get seriously worried and possibly lose a job. Especially with more severe viral illnesses, it's quite common to not be back to baseline in a month, especially if your health is less robust. That no one did a study in March/April 2020 when we had lots of flu and lots of covid, w/ follow-up on a matched sample of each is... disappointing.
Long Covid is the same bucket as Fibromyalgia, where effete, liberal leaning cat ladies put their need for attention. It’s perfect because it requires no provable symptoms and doctors are happy to take our money on phantoms.
I used to think that until I finally got diagnosed with an autoimmune disorder that had slowly been becoming worse and worse. In looking back, I had months long flare-ups in which I had to take advil just to get out of bed. At the time I blamed myself for not working hard enough on being healthy. After a long journey I am finally on a road to healing, with one of my medications being one that is often used successfully for fibromyalgia.
A lot of people - and doctors - rather doubt these diseases are real until they have a family member (or patient) with a disease that is undeniably "real" and not fitting into any other bucket. The suffering is very real. I hope you continue to improve!
The comparison of symptoms to MCAS is interesting, on a MCAS page I read occasionally I see a number of people feeling they have developed MCAS a from a bout with Covid. I don’t know if any have had a medical diagnosis or are seeing the similarities in symptoms themselves.
I'm sure! Most are probably self-diagnosed, as it's very hard to get a "medical diagnosis" of MCAS as so few doctors are familiar with it and/or side with the MCAS "traditionalists" who consider it an extremely rare disease. I happen to side with those who think it rather common, and probably not uncommonly either the cause of long COVID or caused by long COVID (yeah, MCAS needs its whole post to even begin to discuss, but I'd need to take a week off of work to do that!). The link I gave to "immune theory" is an article from prominent "MCAS is common" voices, and I happen to agree with their perspective.
Having seen hundreds (if not thousands) of individuals with severe covid in the hospital, I have perhaps a different take. Early in the pandemic, up to 15% of COVID19 sufferers were admitted to hospitals. As therapies improved (steroids, then monoclonal antibodies), and outpatient oxygen became more available, that percentage certainly declined, though the hospitalization number increased wave-by-wave here in Tennessee. It declined further of course after vaccinations and/or prior infections became commonplace. That said, it was a huge number of people.
And *most* of them had persistent symptoms >4-6 weeks after their illness.
Viral pneumonia/ARDS wrecks the lungs. It leaves scars. (Severe cases of pneumonia from other pathogens do as well, of course)
Covid-19 wrecks the brain. The average person hospitalized with covid, according to UK researchers, loses 5-7 IQ points. If ICU, 10-15. I can’t count how many elderly patients I admitted in ‘20 who started with mild cognitive impairment, but were discharged with severe dementia.
Blood clots, myocarditis, acute liver or pancreatic injury; all of those acute manifestations may have long term consequences.
We had great success in improving outcomes throughout the pandemic. But there was a lot of trial and error on the way. Among survivors of covid-19 from 2020? *Way* more than 1% were physically damaged permanently. Maybe it was even as high as the lower bar 10% figure. There were certainly many more who never got admitted whose symptoms were severe enough to forbid work, and which persisted a long time. I know quite a few healthcare providers in that group. Maybe half again as many? An additional 5%? Like you, the 30% figure seems absurd to me too.
Even among 2020 survivors.
The covid experience is entirely different now, with a mostly-partially-immune population. <5% of covid cases get hospitalized now, and despite their typically advanced ages, they’re not nearly *as sick*. Considering that vastly more Americans got covid in ‘21 and ‘22, and the prevalence of long term injury dropped so greatly (I will not comment here upon my Southeast USA Delta variant experience last summer…), that 10-15% has been diluted out such that I’m sure long covid now is <5% of the total.
Regards.
I enjoy your blog!
Thanks! Your lived experience is a great example of that different sense different physicians get when they hear studies. Everyone you see w/ covid, if you are a hospitalist, is sick enough to be in the hospital! None of my patients have gotten sick enough with covid to be admitted. It changes our "eye test", for sure, when seeing studies finding 10+% rates of long COVID -- understandably it would get a head nod from you, and a "I need to write an article about this bs" from me!
When Wuhan/alpha/delta were wrecking people's lungs and causing much more invasive disease, I think it makes sense there was a much, much higher rate of "long-tail" COVID, esp when long COVID studies incorporated a lot of severely ill patients. I totally buy very high rates of persistent post-viral symptoms in this cohort esp in 2020 through fall 2021. I also suspect it is not a very good predictor of what long COVID rates will be for those infected with Omicron in the past 8 months.
The neurologic/cognitive stuff, esp with hospitalized patients, is pretty scary, at face value. That UK "IQ" study was interesting. On the one hand, some reports implied the testing changes were true before & after tests (see: https://www.webmd.com/lung/news/20210730/study-finds-covid-19-may-lower-intelligence) but I'm pretty sure from the actual study (https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00324-2/fulltext) it's all age/comorbidity adjusted changes in test score for post-covid vs non-covid respondents - which obv has huge potential for confounding. That said, I don't want to sound dismissive about this concern. I am unconvinced by the evidence it's common. But if it is... absolutely terrifying!
Dr McNamara!
Thanks for your work, (I'm sure it helped a lot of folks) and for your comment (even though I am sure your comment is not helping, but merely restating the problem).
You saw "100's if not 1000's?" "Most' of them had persistent symptoms? "Way more" than 1 percent had permanent damage? "Many more" never got admitted. I know I don't have to tell you this is not science. It is scarcely anecdote.
So where is the science? For me, that is the real question. For 30 months we have been urged to follow "The Science." But there doesn't seem to be any. Why not? The answsers to that question range from infuriating to terrifying.
Anybody who publishes on the subject gets to write his own definitions of "long covid?" In what universe does that make sense?
Is a reported death WITH COVID in Bulgaria the same as a reported death WITH COVID in Bolivia? If not it makes no sense to compare them. Is a reported death WITH COVID in Scotland the same as a reported death FROM COVID in Scotland? Then why two prepositions? Despite thousands of stories, miles of screen crawls, hundred of millions of words, I don't know and neither do most of the folks reading this. If you have no control over the language, the definitions of words, you have nothing like science; you have the Tower of Babel.
https://boriquagato.substack.com/p/sunlight-not-gaslight?r=hmjlh&utm_medium=ios
Good observations.
My experience as a outpatient pediatrician has been the first wave was bad the second worse and since then the ripples have been less and less severe. The advantage I have had is that the majority of my paint did not "qualify" for the vaccine initially , so I am able to observe more "natural history" unaffected by vaccines . Most of my patients have had mild disease, the few that have been hospitalized have been the high BMI patients. My asthmatics and even type 1 diabetics have done well.
These are the stats we need to be given so we can educate and advocate for our patients, good luck with your practice
I suspect we are dealing with 3 distinctly different populations. One may represent low grade persistent viremia. The next covid neurologic injury. The last is the group of patients that chronically do not feel well and are looking for a explanation whether it be chronic EB, chronic fatigue, total environmental allergies etc. Ultimately all we have to offer is supportive individualized management requiring deft clinical care which cannot occur if we try to put everyone in the same box. J. Burk Gossom MD
I think there's truth to that -- some combination of patients with certain vulnerabilities (ie overactive immune systems or extensive comorbidities) mixing with different disease courses (ie strong early immune response or weak initial response and severe disease or overwhelmed immune response & end-organ damage) can mix and match to produce a spectrum of symptoms that all end up in the "long COVID" bucket with very different paths and possible treatment approaches.
What percentage of those with long COVID were vaccinated/unvaccinated? I am surprised this was not addressed. Could the overstimulated immune systems have been the result of vaccines?
The article was too long to add another paragraph, but you're right - it's an important point. I've looked at several studies on the subject and they generally find that ppl with vaccines and "breakthrough" infections tend to have a lower rate of long COVID than unvaccinated infected people, in the 15-50% less range. Prone to major confounding, of course. I can say that therefore there does not seem to be any evidence of higher long COVID rates among the vaccinated, and rather it would seem more likely that a "pre-heated" immune response might modestly reduce the risk of either prolonged viral persistence or dysfunctional immune response. How prior infection changes the odds of long covid should be a hot area of interest (I don't think anything has been published yet) as even a 0.5-1% risk of long COVID with every infection would be terrible if we are going to get 10 or 50 infections in our lifetime and the odds stay the same each time!
The shadow of evil lies heavy upon the land.
I have had COVID twice. Latest round in July of 22. This time I am having fatigue and brain fog. complaining of fatigue and muscle weakness, My doctor gave me an anti depressant prescription and sent me on my way. I changed doctors immediately, and asked for a stress test on my heart. I've always been energetic, strong and capable. It's terrifying to feel this way and I tell my wife I feel like I'm going to die. Like stage 4 cancer exhaustion. I'm not sleeping that much but everything is an effort mentally and physically. It's real, it's scary, and it medical community seems completely incapable of acknowledging it. We've had 3 years to study and prepare for this stuff and the only solution was to force an experimental vaccine on us. I'm 51 years old, vaxed and boosted so I didn't lose my job. Much too young to feel this d@#$ old. Our medical system and government have failed to meet the moment.
"It's real, it's scary", indeed. You might need to run through 2-3 doctors before anyone takes you seriously, and another 10 before someone can take the time to try to figure out how to help you. It's unfortunate, but new and/or strange problems are really hard on patients in this country. I imagine at some point one of the centers for long COVID will come out with an algorithmic approach to helping people with your sort of horribly difficult situation; that will help give physicians some tools, at least, to begin to offer suggestions. Most are just overwhelmed. I hope you're "the 60%" who get better.
Thanks for the reply doc. My stress test today shows my heart to be ok. Elevated bp but while testing, I had an interesting conversation with the techs. Kaiser fired a very large number of staff for refusing the vaccine and the staffing shortages are definitely apparent. It helps explain why the level of care and time has significantly dropped over the past couple of years. Add that to larger volume of visits due to contagious strains of COVID and it was makes sense. My wife has had COVID and we have had to fight Kaiser tooth and nail for care. Offering an appointment two weeks out while you're coughing uncontrollably and we ended up in the ER instead. Then they failed to follow up as promise. Then we could only get a phone appointment from an advice nurse. Then another weekend goes by and symptoms continue. It has turned into a bad sinus infection with green phlegm and she can't get antibiotics. It's a bizarre world. We're 52, raised 6 kids. We don't often seek healthcare but are very familiar with treatments and symptoms after raising children. The healthcare in this country is terrible, at least for us in California.
"The results “suggest that physical symptoms persisting 10 to 12 months after the COVID-19 pandemic first wave may be associated more with the belief in having experienced COVID-19 infection than with actually being infected with the SARS-CoV-2 virus,” the authors wrote in JAMA Internal Medicine."
https://jamanetwork.com/journals/jama/article-abstract/2787741
Many of the symptoms described (with the exception of hard symptoms like taste disturbance) are suspiciously similar to anxiety disorders.
Now we know that societal reaction to covid has resulted in a significant increase in psychological disorders.
Is this just misdiagnosis?
Anxiety disorders are a "big tent" and the diagnosis itself suffers from a bad case of "chicken or egg" syndrome, Rolando.
What's most interesting to me about Doc Hollander's article is his observation and speculative analysis regarding similarities of "long Covid" to chronic fatigue syndrome and similar symptom patterns as reported over time.
Self-reporting of symptoms, for which no objective test has yet been found, are rightly viewed with a certain degree of skepticism and commonly result in mental health referrals.
Here is where we must confront the question; "which came first; the chicken or the egg?"
Symptoms of mysterious origin are not inevitably psychogenic, but distress resulting from the experience of such symptoms, combined with struggling against refusals to explore and diagnose, can and do exacerbate adjustment disorders arising from incapacitation.
One of the most common presenting symptoms of an adjustment disorder is anxiety. In this situation, anxiety is a symptom of dysmorphia with a different origin. By this, I mean that the root cause is not anxiety; when the client learns methods for coping with their disability, the adjustment disorder is thereby treated and anxiety is reduced to manageable levels.
More simply, anxiety is a reasonable and ordinary result of disabilities with unknown origins.
You make a very good point about anxiety disorders, and the challenge is to separate anxiety as a prominent presenting symptom from its origins. This is where mental health practitioners often get things very wrong, treating only the secondary symptom and ignoring or denigrating the root cause and primary disorder.
And no wonder; mental health professionals are entirely reliant on physicians to diagnose underlying physical maladies. The best treatment is that which keeps an open mind throughout. Ultimately, all that can be done is to assist a client with adaptation to reduced capacity. The mistake occurs when an inability to adjust, results in imposition of increasingly invasive or risky series of treatments.
It's a terrible conundrum; is the intractability of the client's primary presenting symptom a sign of a stubborn anxiety disorder, or evidence of an undiagnosed medical root cause?
Perhaps the reason I find Doc Hollander's hypothesis (or speculation, to avoid possibly unwarranted assumption) of chronic inflammation so compelling, is having witnessed one patient's decade-long struggle. When he finally discovered the root cause of his susceptibility to bacterial infection and sudden-onset series of allergic reactions to common foods and medications, his chronic anxiety resolved.
That root cause was never formally diagnosed, but resolution of all symptoms correlated precisely with removal of his unerupted, horizontally-growing impacted wisdom teeth. Following the surgical removal of those teeth, the patient's vestibular symptoms were greatly reduced, his seemingly-endless series of bacterial infections ceased and the frequency of random allergic reactions to formerly well-tolerated substances was reduced to zero.
Correlation does not equal causation, however suggestive it may be. Shall we then ascribe resolution of the patient's multivariate symptoms to a placebo effect? Perhaps, but it may be that we do so, only out of stubbornness.
In support of my urging the maintenance of an open mind, I offer this overview:
https://journals.lww.com/otology-neurotology/Fulltext/2001/05000/INTERFACE_BETWEEN_VESTIBULAR_DYSFUNCTION_AND.35.aspx
The most debilitating and distressing symptom reported by clients presenting with anxiety is not tachycardia, it is dizziness or light-headedness. As the research accumulates, we are faced with the prospect of having to acknowledge the possibility of a historical epidemic of misdiagnosis. Where every effort toward medical diagnosis has been made, that epidemic is understandable and forgivable.
A few decades ago, a psychologist of my acquaintance privately shared his sense of relief about treating clients with anxiety that had previously obtained a medical diagnosis of vestibular or vascular disorder. An honest man, he confessed to uncertainty about anxiety disorder diagnoses of uncertain origin.
It's not easy for the otolaryngologists, either. Meniere's is hardly the only vestibular disorder, nor is BPPV.
So what is a diagnostician to do under such circumstances? Leveraging the placebo effect with a reassuring air of certainty is not an entirely unproductive strategy, as long as it doesn't result in a counterproductive manifestation of hubris.
We assume anxiety an invariable root cause, at great peril to patients and to our own integrity.
I am not a physician but last night I watched a segment on Long Covid on the PBS Weekend News. It had the usual public television presentation of an articulate spokesperson who was said to be suffering from the disorder along with a physician who was researching the problem or at least supposedly compiling statistical data and who spoke of the underrecognized ubiquity of the problem. As a psychotherapist for over 50 years, I have seen medicine's frustration with vague constellations of symptoms with no clear findings on the usual array of medical tests. The insistence that their suffering is real in the face of will-o'-the-wisp findings is invariably as much a political problem as a medical one. Multiple chemical sensitivity syndrome as well as others mentioned by Dr. Hollander come to mind.
I have long covid. Its dreadful. . My guess is that the body just has to heal ( or not) and there is not much medicine can do to help. But my anger is related to this: The damn virus was made in a lab, result of diabolical animal research on gain of function. The research, jointly financed by multiple countries, was done in China surely because sooner or later they need human subjects to infect and they can't get those easily in western countries. This monstrous research needs to stop. Leaks will happen again, its inevitable. It appears there are dozens (?) or scores (?) of labs doing gain of function research and bio weapon research. This is the real cause of the suffering. We need an International treaty to ban it.
Ban gain of function research? Good luck with that. Dream on!!
GOF research can no more be stopped than research on nuclear weapons, quantum computing, or any other military advance.
Thanks for your take, Buzz.
I think the biggest problem in defining “long covid” at present comes out of the US CDC’s rather unhelpful definition.
4 weeks of vague symptoms with no specific criteria to pin down the diagnosis?
That’s not a diagnostic criterion, it’s a fishing expedition.
A mild depressive episode that requires no specific medical treatment will easily fall under the criteria you list above, not to mention a wide variety of other medical conditions.
I mean, I wonder if your surveyed everyone with a bad case of the flu, what proportion would have at least some of these symptoms for 4-5 weeks after infection?
I’ve been following the 3 month timeline advised by the WHO and poof! magically most people feel better if you wait a few more weeks after their covid diagnosis as they get back to a normal life.
This isn’t to deny the reality of people with actual long covid. But it’s going to continue causing problems if the media and some medical authorities continue telling people they might have a highly disabling medical condition simply because their viral illness laid them up for 1 month.
I tend to agree, which is why I think somewhere around 2-3 months is a better cut-off. It's also enough time to get seriously worried and possibly lose a job. Especially with more severe viral illnesses, it's quite common to not be back to baseline in a month, especially if your health is less robust. That no one did a study in March/April 2020 when we had lots of flu and lots of covid, w/ follow-up on a matched sample of each is... disappointing.
Long Covid is the same bucket as Fibromyalgia, where effete, liberal leaning cat ladies put their need for attention. It’s perfect because it requires no provable symptoms and doctors are happy to take our money on phantoms.
I used to think that until I finally got diagnosed with an autoimmune disorder that had slowly been becoming worse and worse. In looking back, I had months long flare-ups in which I had to take advil just to get out of bed. At the time I blamed myself for not working hard enough on being healthy. After a long journey I am finally on a road to healing, with one of my medications being one that is often used successfully for fibromyalgia.
A lot of people - and doctors - rather doubt these diseases are real until they have a family member (or patient) with a disease that is undeniably "real" and not fitting into any other bucket. The suffering is very real. I hope you continue to improve!
The comparison of symptoms to MCAS is interesting, on a MCAS page I read occasionally I see a number of people feeling they have developed MCAS a from a bout with Covid. I don’t know if any have had a medical diagnosis or are seeing the similarities in symptoms themselves.
I'm sure! Most are probably self-diagnosed, as it's very hard to get a "medical diagnosis" of MCAS as so few doctors are familiar with it and/or side with the MCAS "traditionalists" who consider it an extremely rare disease. I happen to side with those who think it rather common, and probably not uncommonly either the cause of long COVID or caused by long COVID (yeah, MCAS needs its whole post to even begin to discuss, but I'd need to take a week off of work to do that!). The link I gave to "immune theory" is an article from prominent "MCAS is common" voices, and I happen to agree with their perspective.