I had an odd interaction with my doctor recently re: long Covid: he feels that we won't be talking about it much in 10 years, and I got the impression he felt it's not a "real" thing. Some points he brought up: (1) historically these sorts of reported effects often happen after an outbreak, and they taper off after some years, even though the original disease is still around and (2) it's mainly reported in women and young people, who are not the ones most susceptible to the original disease.
I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis.
I didn't really get into the weeds of that discussion, but it kinda put me off, since I have had several friends over the years who have had a hard time convincing the medical establishment that they have a real condition. Things like Chronic Fatigue, Ehlers-Danlos, Lyme's as mentioned, etc.
There's this historical view that since it is mainly self-diagnosed women affected by all these, it's just a case of "women complaining" or somesuch (maybe not stated so directly) and not a real condition or mostly psychological.
It gets dismissed, so it gets less research. Since it gets less research, doctors can say "there's not strong evidence to support it," and so the cycle continues. There's some sexism (and other -isms) inherent in the system, I do believe.
It's entirely possible that women, for biological reasons, could be more susceptible to these system-wide hard-to-pin-down chronic issues. I really don't know; I wish there was more research being done.
But it was just a weird moment where I got to witness that dismissiveness firsthand, from someone who otherwise I generally respect.
The impression I've gotten from the reading I've done on these sorts of conditions is that part of the reason doctors are reluctant to do research is because it such a fraught area that anyone who engages with it are targeted by groups of sufferers. Even researchers who favour a biological cause can be subject to unwelcome attention and harassment.
These sufferers are not all, and probably not even most, of the total, but they are organised and militant, and fully convinced of two things: That their condition has a 100% biological cause, and that they cannot trust the medical and scientific establishment. Even if they are completely right, it has created a situation where the cost of getting involved as a medical professional are just too high, so it has become a self-perpetuating situation.
Unfortunately, it's this kind of dismissiveness that's driving people to the likes of RFK Jr. When people don't feel like they're being listened to they'll go out in search of all manner of remedies proven or not. They want answers and often the answer should be "we don't know" along with acknowledging that a patient's experience is valid and should not be ignored. The problem in our healthcare system is that digging deeply into the causes of someone's disease isn't monetarily feasible because insurance companies refuse to cover such deep investigations in most cases. So we have cookie-cutter medicine driven by insurance companies - if you don't fit into a particular standardized bin there's not much help for you. It's often up to the patient to "do their own research" and that has very mixed results.
Yeah... I tested positive for Babesia, and took the pills to treat it (the same ones are used to treat malaria). And it went fine and now I test negative.
But as I went online to see what other people's experiences were, I found a number of people who were like "I've decided to self-treat this infectious (and potentially deadly) infection with 11 herbs and spices." I can see how people get driven to do that, but it's still tragic.
Took a family members years to get their Lyme diagnosed, and energy levels never fully recovered. Really scary how easily people can get permanently damaged.
In https://medicalxpress.com/news/2024-07-covid-puzzle-pieces-f... the author says: "The intense scientific effort that long COVID sparked has resulted in more than 24,000 scientific publications, making it the most researched health condition in any four years of recorded human history."
Conveniently he provides the search term used to produce the "24,000" figure:
> I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis.
I live in New Hampshire, the people I know who got lyme and say its chronic/it ruined their life are all vegan, and one vegetarian. The people who are not called it a bad week. I suspect diets (specifically diets of deficiencies) play a somewhat tragic role in a lot of these patients.
This is always a tough conversation. Yes, people will be wrong to dismiss patients. The danger is that you can also be wrong to accept patients.
It sucks, as you never know where in the distribution you are. If there is indeed a social contagion vector, are you in that social contagion, or do you have a specific thing? How would you know?
Chronic Lyme's disease is an odd example to bring up. It is fairly accepted that a large portion of the people that have it never had Lyme's disease? Do you dispute that take? (Legitimate question.)
If there are specific tests that are being denied on this, I'm game for doing more tests. I don't know why some people (doctors and otherwise) are opposed to some things. That said, I'm also not sure I agree that we should open the floodgates to questionable treatments. (And I have to acknowledge that testing isn't automatically an answer. Base rates and recall are real things.)
To put yourself in the doctor's shoes, how many times have they had people push for them possibly having some obscure thing that they turn out to not have. And you are close to dismissing the doctor without knowing any more about why they have their opinion.
> Do you dispute that take? (Legitimate question.)
I don't have much knowledge one way or the other. I have no reason to doubt you though (:
My main direct experience is with someone who did have normal Lyme's, and then also had chronic health issues afterwards. Maybe today that would be called "Post-treatment Lyme disease syndrome," though this was decades ago and the terminology was not so specific (as I recall, at least).
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Agreed w/regard to the difficult position doctors are in. They don't want their resources to be abused. But then if the 1% (or whatever) genuine person who needs it comes through, they might get wrongly turned away. Sucks all around!
I'd be surprised if your friend had too much resistance if they were documented as having been treated for Lyme's disease. Not shocked, sadly; but surprised.
Also, I think it is more than just abusing the resources of the doctors. Without perfect knowledge of what you are looking at, studies have shown that more testing can lead to more procedures without necessarily increasing conditions. Look into xrays and back pains. Noting that my knowledge may be out of date, but my understanding is that xrays do not help people recover from back pain. They do lead to patients getting more surgeries, though.
Even this story, how many of the tests and treatments that this person has gone through were useful? It sucks, because I don't think we want to shame people for searching for answers. I do think tracking every pain that you feel could oddly lead you to feeling more pain, though. Look into how focusing on tinnitus makes it worse.
Which is to say, doctors probably get more success than we want to consider by telling people to hang in there and keep trying. We can call it reverting to the mean experience, and that probably is accurate enough. But it greatly complicates this situation.
Mental illness is complicated and it can create real physiological symptoms. Someone with extreme anxiety will feel heart palpitations, fatigue, and a bunch of other symptoms despite the cause not being an actual underlying disease.
Is it always the case that there's no underlying disease? No, but is it often the case? Maybe?
Those that make it part of their identity and reinforce it make it worse.
I don't know what's going on here, but if I had to place a bet it's on the side of skepticism wrt 'long covid' in most cases.
As someone who has a chronic illness myself, I think it's absolutely important to consider anxiety as a potential source. I'd much prefer if meditation or therapy would fix my health issues rather than something more expensive/annoying/side-effecting.
My complaint is that "this is caused by anxiety" is treated as an assumption, rather than as a potential cause to be investigated. Moreover, I've seen doctors use anxiety as a way to write-off and dismiss a patient ("it's all in your head" shouldn't be dismissive; it's still something that needs to be treated).
Sometimes a doctor might say, "why don't you try exercising three times a week for three weeks and tell me if that makes a difference," to test if that makes a difference. But I've never heard a doctor say "try meditating every day and then we'll see if that will stop your fainting episodes."
All that is to say, I wish doctors viewed anxiety as a cause to be investigated, rather than a dead end that they can use to ignore a patient.
I have two friends with Myalgic Encephalomyelitis (aka chronic fatigue) at life-ruining levels, likely from the 2009 swine flu. To very mentally healthy women both before and after, and physically very healthy before.
Yeah it's tricky; I imagine it's a mix of things going on. Suppose 80% of cases are fake. If we see that, and dismiss the whole thing as a result, that leaves the 20% of real cases ignored/dismissed. That could still be a lot of people who we are now wrongly telling it's all in their mind.
Fibromyalgia is another one. Predominantly diagnosed or reported in women, though I (a male) got it from my mother (if it is even hereditary, otherwise just bad luck).
I wouldn't be surprised if many of these chronic symptoms boil down to nerve damage from either infections or the subsequent inflammation.
My brother's got pretty bad long COVID symptoms, but there's nothing physically wrong that doctors can find despite running every test under the sun related to his lungs and heart. Again, best guess is some sort of nerve damage causing the symptoms.
It's also because there is a stigma around mental reasons. "Hypochondria", "Hysteria", "Psychosomatic" ... all these words have negative connotations, even though the mind/body connection is a real thing.
Would be a fascinating study to have Long Covid patients drop LSD and see for effects.
I mean, hypochondria is definitely not a good thing, tbf! And psychosomatic illnesses are qualitatively different from physical ones, in terms of diagnosis and treatment. Hopefully all doctors are on board with the whole “you can’t just snap yourself out of mental illness” thing by now, but that’s perhaps a bit naive…
There is a book The Deep Places: A Memoir of Illness and Discovery by a New York Times columnist, about his Chronic Lyme's disease. And how he increasingly checks out alternative medicine when establishment medicine has nothing to offer.
How far are we in detecting / localizing mitochondrial dysfunctions? IIRC aside from inflammation that was a potentially common factor between Long Covid, CFS, Lyme etc
Sexism and racism are absolutely rampant when it comes to dismissing people’s medical concerns, you’re totally on track there. It’s not “I hate them and want them to suffer” prejudice, it’s “well that group of people tends to be less smart so they’re probably faking on accident” prejudice.
That said, as a harsh skeptic of long covid: does the author present any evidence? Or just “I’ve been tired a lot, and I feel like I wasn’t before”? Sadly the article itself is paywalled for me.
More scientifically, what is long covid? Is that how viruses work? I guess the idea is that the virus is hiding out somewhere in the body where the immune system and doctors can’t find it…?
> More scientifically, what is long covid? Is that how viruses work? I guess the idea is that the virus is hiding out somewhere in the body where the immune system and doctors can’t find it…?
This is a big open question. Viruses absolutely can hang around for decades with the immune system unable to remove it (see for example shingles). It could also be damage done during infection that the body just isn't fully able to repair. Or it could be phycological (we can't rule it out), or some other not yet understood mechanism.
I'm not a doctor but I know there are many widely accepted diseases that there's little understanding of and limited treatment for. MS for example; there's a basic idea of how it works, but it's almost random in how it presents and how it can be treated, and it's incurable.
My brother has been suffering ever since his first or second encounter with COVID, I forget which.
His resting heart rate was very elevated from before he got sick, and recovery rate quadrupled. Just walking up a flight of stairs or two would require him to sit down, winded, to recover.
After all sorts of fitness tests, heart monitoring, lung tests, etc, the best guess the doctors could come up with was nerve damage from the infection or subsequent inflammation.
He's gotten covid 4 times total now. I don't think there's any way to tell if he's just unlucky in getting exposed to it or if there is some mechanism that lets it hide in the body, though I suspect he's just unlucky.
It's not only "long-lyme" patients who have been ignored or downplayed, but also many "long-covid" patients from the other four endemic coronaviruses, who have been reporting these symptoms for _decades_ now.
If you want to be a little shocked, try a scholarly publications search for "{hku1|oc43|nl64} cardiovascular", with a pre-2020 filter. You'll be amazed. 229e seems to have less research in this area, but it seems very likely that all five coronaviruses have this effect.
I think that the hype surrounding covid-19, for all its problems, has helped to elevate the reality of post-infection syndromes. I just hope that actual care is the long-term result, rather than more profit-seeking and power grabs over one single pathogen.
The age peak is at 40-49 years. Indeed it's much higher in women but also even higher in transgender and bisexual people. It's almost as if stress from constant microaggressions makes you more susceptible to illness. What do I know, of course, I am not a doctor.
This is an amazing piece of work for the graphical displays and data gathering completely independent of the compelling story of extended human suffering it presents. But -- and in no way do I mean this to detract from the quality of the work or the reality of the suffering -- I have to wonder what motivated the author to start tracking their symptoms so early if they were initially mild. This data is only interesting because it developed into a chronic disease, and there's obviously no way she could have known that would happen until much later. So why start keeping such meticulous records so soon?
I'm surprised there are people here who are skeptical that long covid is real, as I know plenty of people in my community and social network who have been dealing with it.
There is national-level health guidance about long covid — I don't think it is very plausible that it is a simply "imaginary" problem:
I do wonder how much of this is self-fulfilling atrophy. You're tired and sick, so you stay in bed. Then you get weak, making you more tired. Hopefully she can turn things around, regardless of underlying causes.
It sounds like for cases like hers, trying and pushing yourself to exercise only makes you weaker, not stronger. If you're curious, her channel has a number of videos about this.
Yeah, she was so active and productive and engaging as a youtube content creator. She is one of my favorites! So it's just stunning to see how profound whatever is happening for her is. She went from bright and engaging to basically a state of profound depression (I mean this in a physical sense.)
Hopefully she finds out the whole picture some day, makes a recovery, and will do an extensive retrospective.
it's definitely an interesting topic, because my skeptical mind is easily split in one of two ways-
either 1) it's a real phenomena that is under-diagnosed and ignored by medical professionals (something I believe happens) or 2) it's not a real condition and patients who suffer from it are suffering from a mix of mental illness combined with other real diseases that are exacerbated (something that I believe happens)
both sound like very real, very possible problems, and neither one seems more likely to me than the other. Or perhaps it's a big mix of both, on a case by case basis.
I don't have long Covid I think, but in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection. It is a very odd virus.
> in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection
I would like to see more scientific study on the matter.
I suspect it is probably a real, but rare thing, and that the vast majority of suspected cases are largely due to physical inactivity.
I myself had my first infection in March 2024 and had "lung capacity" issues for several months afterwards (~November 2024). I saw doctors about it, but they were largely dismissive, stating I needed to do more exercise, when I was in reasonably top physical shape (MMA 4x a week).
I felt like I was on my own, took charge, did my own research. What seemed to end up helping and get the "junk" out of my lungs was regularly using a spirometer on my own and, perhaps not wise, doing intense (as best I could muster) runs, which would cause me to cough up some of the awful-tasting fluid.
It ended up working out well for me and I'm back to my former capacity.
I don't think people get how difficult it can be to interact with doctors when you have a chronic illness.
In high school, I started to get debilitating joint pain. I had trouble walking, typing, or writing. I went to many (at least a dozen) doctors. Most of them were unsympathetic and accused me of trying to get access to pain pills. Or told me that "this is just what puberty is like." Eventually, I happened upon _one_ doctor who gave me some blood tests and I tested positive for Celiac disease. Treating that fixed my joint pain.
Celiac disease is not a rare disease--it affects 1% of the US population--yet most of the doctors I saw didn't even think to test for it, despite join pain being a typical symptom. Instead, they gaslit me into thinking that it was "all in my head." Clearly they were wrong, and I have the blood test and endoscopy to prove it!
I'm a member of a "Young people with chronic illness" meetup, and my story is absolutely the norm. People who have conditions with clear and measurable diagnosis criteria go through many doctors telling them nothing is wrong before they find a doctor who will run tests. I can only imagine how much worse it is for conditions which are diagnosed "by exclusion" or something else that's not cut-and-dried.
I really wish that Tech people would not go outside of our purview to comment on medicine. Knowledge about how to build and maintain software does not give us any useful intuitions or insights into medicine, but the gigantic egos in this industry turn us all into pundits about what other professions are doing wrong. Stop trying to second guess and cherry pick medical studies that you half read.
I think (hope?) we all agree that awareness of "long-covid" is important. But it's also entirely orthogonal to designations of a pathogen as being "over" or "not over".
Coronaviruses have been with humanity for a very long time, and people have been reporting post-infection syndromes surrounding them - and have been ignored or downplayed - for decades now.
There are five endemic coronaviruses, all of which likely started as an epidemic (two are documented of course) and evolved into what we call a "common cold", with susceptible populations suffering outsized effects.
Now that we've finally (and I think we can say, successfully) achieved endemic equilibrium from covid-19, it's important not to lose compassion for those still suffering (and to perhaps bring awareness online regarding this syndrome going back a long time - some have been suffering for many years).
We have not achieved equilibrium. There is wave after wave, and people are getting increasingly disabled. The virus continues to mutate but we have dropped our defenses.
Viruses become "mild" when they kill enough people for natural selection to take effect. That has not happened.
I think it's important because a lot of people still don't know what it entails.
For example, you say "cancer" and everyone has an idea of what that is. As of the 2000s/2010s, awareness has been rising about mental health and what it actually means to have mental illness. But if you say "long covid", most people still don't know what that really means to a sufferer of it. With its relative commonness compared to other, rarer yet more well-known illnesses (like DID), I'd say it deserves more attention than it gets.
If we think of public disease messaging as having limited "bandwidth", it makes sense to message about the most common, newest, and least understood diseases, wouldn't you agree?
The more the public understands what having an illness means for its sufferer, the more understanding the public will be of that person's needs and limitations, and thus the fuller a life that person will be able to live as their limitations are accommodated.
I think learning the specific names and details is a waste of time. That is important information for the patient and their doctor, but not the general public.
It doesnt add any value over the alternative of people having an unspecified chronic disease and requesting X accommodation, especially as accommodations needed or desired vary wildly
To your point, people know the word "cancer" but have no clue what it entails or what accommodations a specific person needs or wants.
People can march around raising cancer awareness, but it is also a pointless performative act for the benefit of the performer.
If you have a sick person in your life and want to be compassionate, figure out what accommodation they actually want or need.
Because most know someone that has had covid. Then still its not public knowledge it can be as debilitating as it is, even IQ loss and brain fog effect should be better understood by the public as well.
Plus its not well researched so we should at least be trying to get the symptoms that are proven out there so we can get more information on it
I had an odd interaction with my doctor recently re: long Covid: he feels that we won't be talking about it much in 10 years, and I got the impression he felt it's not a "real" thing. Some points he brought up: (1) historically these sorts of reported effects often happen after an outbreak, and they taper off after some years, even though the original disease is still around and (2) it's mainly reported in women and young people, who are not the ones most susceptible to the original disease.
I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis.
I didn't really get into the weeds of that discussion, but it kinda put me off, since I have had several friends over the years who have had a hard time convincing the medical establishment that they have a real condition. Things like Chronic Fatigue, Ehlers-Danlos, Lyme's as mentioned, etc.
There's this historical view that since it is mainly self-diagnosed women affected by all these, it's just a case of "women complaining" or somesuch (maybe not stated so directly) and not a real condition or mostly psychological.
It gets dismissed, so it gets less research. Since it gets less research, doctors can say "there's not strong evidence to support it," and so the cycle continues. There's some sexism (and other -isms) inherent in the system, I do believe.
It's entirely possible that women, for biological reasons, could be more susceptible to these system-wide hard-to-pin-down chronic issues. I really don't know; I wish there was more research being done.
But it was just a weird moment where I got to witness that dismissiveness firsthand, from someone who otherwise I generally respect.
The impression I've gotten from the reading I've done on these sorts of conditions is that part of the reason doctors are reluctant to do research is because it such a fraught area that anyone who engages with it are targeted by groups of sufferers. Even researchers who favour a biological cause can be subject to unwelcome attention and harassment.
These sufferers are not all, and probably not even most, of the total, but they are organised and militant, and fully convinced of two things: That their condition has a 100% biological cause, and that they cannot trust the medical and scientific establishment. Even if they are completely right, it has created a situation where the cost of getting involved as a medical professional are just too high, so it has become a self-perpetuating situation.
Fortunately in the case of Long COVID, biological mechanisms are being unearthed constantly for those that pay attention.
Unfortunately, it's this kind of dismissiveness that's driving people to the likes of RFK Jr. When people don't feel like they're being listened to they'll go out in search of all manner of remedies proven or not. They want answers and often the answer should be "we don't know" along with acknowledging that a patient's experience is valid and should not be ignored. The problem in our healthcare system is that digging deeply into the causes of someone's disease isn't monetarily feasible because insurance companies refuse to cover such deep investigations in most cases. So we have cookie-cutter medicine driven by insurance companies - if you don't fit into a particular standardized bin there's not much help for you. It's often up to the patient to "do their own research" and that has very mixed results.
Yeah... I tested positive for Babesia, and took the pills to treat it (the same ones are used to treat malaria). And it went fine and now I test negative.
But as I went online to see what other people's experiences were, I found a number of people who were like "I've decided to self-treat this infectious (and potentially deadly) infection with 11 herbs and spices." I can see how people get driven to do that, but it's still tragic.
Took a family members years to get their Lyme diagnosed, and energy levels never fully recovered. Really scary how easily people can get permanently damaged.
In https://medicalxpress.com/news/2024-07-covid-puzzle-pieces-f... the author says: "The intense scientific effort that long COVID sparked has resulted in more than 24,000 scientific publications, making it the most researched health condition in any four years of recorded human history."
Conveniently he provides the search term used to produce the "24,000" figure:
> I brought up that it seemed reminiscent of Chronic Lyme's disease, and he said that yes, that's also a very questionable diagnosis.
I live in New Hampshire, the people I know who got lyme and say its chronic/it ruined their life are all vegan, and one vegetarian. The people who are not called it a bad week. I suspect diets (specifically diets of deficiencies) play a somewhat tragic role in a lot of these patients.
This is always a tough conversation. Yes, people will be wrong to dismiss patients. The danger is that you can also be wrong to accept patients.
It sucks, as you never know where in the distribution you are. If there is indeed a social contagion vector, are you in that social contagion, or do you have a specific thing? How would you know?
Chronic Lyme's disease is an odd example to bring up. It is fairly accepted that a large portion of the people that have it never had Lyme's disease? Do you dispute that take? (Legitimate question.)
If there are specific tests that are being denied on this, I'm game for doing more tests. I don't know why some people (doctors and otherwise) are opposed to some things. That said, I'm also not sure I agree that we should open the floodgates to questionable treatments. (And I have to acknowledge that testing isn't automatically an answer. Base rates and recall are real things.)
To put yourself in the doctor's shoes, how many times have they had people push for them possibly having some obscure thing that they turn out to not have. And you are close to dismissing the doctor without knowing any more about why they have their opinion.
> Do you dispute that take? (Legitimate question.)
I don't have much knowledge one way or the other. I have no reason to doubt you though (:
My main direct experience is with someone who did have normal Lyme's, and then also had chronic health issues afterwards. Maybe today that would be called "Post-treatment Lyme disease syndrome," though this was decades ago and the terminology was not so specific (as I recall, at least).
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Agreed w/regard to the difficult position doctors are in. They don't want their resources to be abused. But then if the 1% (or whatever) genuine person who needs it comes through, they might get wrongly turned away. Sucks all around!
I'd be surprised if your friend had too much resistance if they were documented as having been treated for Lyme's disease. Not shocked, sadly; but surprised.
Also, I think it is more than just abusing the resources of the doctors. Without perfect knowledge of what you are looking at, studies have shown that more testing can lead to more procedures without necessarily increasing conditions. Look into xrays and back pains. Noting that my knowledge may be out of date, but my understanding is that xrays do not help people recover from back pain. They do lead to patients getting more surgeries, though.
Even this story, how many of the tests and treatments that this person has gone through were useful? It sucks, because I don't think we want to shame people for searching for answers. I do think tracking every pain that you feel could oddly lead you to feeling more pain, though. Look into how focusing on tinnitus makes it worse.
Which is to say, doctors probably get more success than we want to consider by telling people to hang in there and keep trying. We can call it reverting to the mean experience, and that probably is accurate enough. But it greatly complicates this situation.
Maybe they're correct?
Mental illness is complicated and it can create real physiological symptoms. Someone with extreme anxiety will feel heart palpitations, fatigue, and a bunch of other symptoms despite the cause not being an actual underlying disease.
Is it always the case that there's no underlying disease? No, but is it often the case? Maybe?
Those that make it part of their identity and reinforce it make it worse.
I don't know what's going on here, but if I had to place a bet it's on the side of skepticism wrt 'long covid' in most cases.
As someone who has a chronic illness myself, I think it's absolutely important to consider anxiety as a potential source. I'd much prefer if meditation or therapy would fix my health issues rather than something more expensive/annoying/side-effecting.
My complaint is that "this is caused by anxiety" is treated as an assumption, rather than as a potential cause to be investigated. Moreover, I've seen doctors use anxiety as a way to write-off and dismiss a patient ("it's all in your head" shouldn't be dismissive; it's still something that needs to be treated).
Sometimes a doctor might say, "why don't you try exercising three times a week for three weeks and tell me if that makes a difference," to test if that makes a difference. But I've never heard a doctor say "try meditating every day and then we'll see if that will stop your fainting episodes."
All that is to say, I wish doctors viewed anxiety as a cause to be investigated, rather than a dead end that they can use to ignore a patient.
I have two friends with Myalgic Encephalomyelitis (aka chronic fatigue) at life-ruining levels, likely from the 2009 swine flu. To very mentally healthy women both before and after, and physically very healthy before.
Yeah it's tricky; I imagine it's a mix of things going on. Suppose 80% of cases are fake. If we see that, and dismiss the whole thing as a result, that leaves the 20% of real cases ignored/dismissed. That could still be a lot of people who we are now wrongly telling it's all in their mind.
Fibromyalgia is another one. Predominantly diagnosed or reported in women, though I (a male) got it from my mother (if it is even hereditary, otherwise just bad luck).
I wouldn't be surprised if many of these chronic symptoms boil down to nerve damage from either infections or the subsequent inflammation.
My brother's got pretty bad long COVID symptoms, but there's nothing physically wrong that doctors can find despite running every test under the sun related to his lungs and heart. Again, best guess is some sort of nerve damage causing the symptoms.
It's also because there is a stigma around mental reasons. "Hypochondria", "Hysteria", "Psychosomatic" ... all these words have negative connotations, even though the mind/body connection is a real thing.
Would be a fascinating study to have Long Covid patients drop LSD and see for effects.
I mean, hypochondria is definitely not a good thing, tbf! And psychosomatic illnesses are qualitatively different from physical ones, in terms of diagnosis and treatment. Hopefully all doctors are on board with the whole “you can’t just snap yourself out of mental illness” thing by now, but that’s perhaps a bit naive…
There is a book The Deep Places: A Memoir of Illness and Discovery by a New York Times columnist, about his Chronic Lyme's disease. And how he increasingly checks out alternative medicine when establishment medicine has nothing to offer.
https://www.amazon.com/Deep-Places-Memoir-Illness-Discovery/...
How far are we in detecting / localizing mitochondrial dysfunctions? IIRC aside from inflammation that was a potentially common factor between Long Covid, CFS, Lyme etc
Doctors live and die by testing. If tests don't show anything, you don't have anything.
Sexism and racism are absolutely rampant when it comes to dismissing people’s medical concerns, you’re totally on track there. It’s not “I hate them and want them to suffer” prejudice, it’s “well that group of people tends to be less smart so they’re probably faking on accident” prejudice.
That said, as a harsh skeptic of long covid: does the author present any evidence? Or just “I’ve been tired a lot, and I feel like I wasn’t before”? Sadly the article itself is paywalled for me.
More scientifically, what is long covid? Is that how viruses work? I guess the idea is that the virus is hiding out somewhere in the body where the immune system and doctors can’t find it…?
> More scientifically, what is long covid? Is that how viruses work? I guess the idea is that the virus is hiding out somewhere in the body where the immune system and doctors can’t find it…?
This is a big open question. Viruses absolutely can hang around for decades with the immune system unable to remove it (see for example shingles). It could also be damage done during infection that the body just isn't fully able to repair. Or it could be phycological (we can't rule it out), or some other not yet understood mechanism.
I'm not a doctor but I know there are many widely accepted diseases that there's little understanding of and limited treatment for. MS for example; there's a basic idea of how it works, but it's almost random in how it presents and how it can be treated, and it's incurable.
My brother has been suffering ever since his first or second encounter with COVID, I forget which.
His resting heart rate was very elevated from before he got sick, and recovery rate quadrupled. Just walking up a flight of stairs or two would require him to sit down, winded, to recover.
After all sorts of fitness tests, heart monitoring, lung tests, etc, the best guess the doctors could come up with was nerve damage from the infection or subsequent inflammation.
He's gotten covid 4 times total now. I don't think there's any way to tell if he's just unlucky in getting exposed to it or if there is some mechanism that lets it hide in the body, though I suspect he's just unlucky.
Yes, it's a frustrating attitude.
It's not only "long-lyme" patients who have been ignored or downplayed, but also many "long-covid" patients from the other four endemic coronaviruses, who have been reporting these symptoms for _decades_ now.
If you want to be a little shocked, try a scholarly publications search for "{hku1|oc43|nl64} cardiovascular", with a pre-2020 filter. You'll be amazed. 229e seems to have less research in this area, but it seems very likely that all five coronaviruses have this effect.
I think that the hype surrounding covid-19, for all its problems, has helped to elevate the reality of post-infection syndromes. I just hope that actual care is the long-term result, rather than more profit-seeking and power grabs over one single pathogen.
The data only partially supports this
https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm
The age peak is at 40-49 years. Indeed it's much higher in women but also even higher in transgender and bisexual people. It's almost as if stress from constant microaggressions makes you more susceptible to illness. What do I know, of course, I am not a doctor.
Did you know there are females that work in the medical industry?
This is an amazing piece of work for the graphical displays and data gathering completely independent of the compelling story of extended human suffering it presents. But -- and in no way do I mean this to detract from the quality of the work or the reality of the suffering -- I have to wonder what motivated the author to start tracking their symptoms so early if they were initially mild. This data is only interesting because it developed into a chronic disease, and there's obviously no way she could have known that would happen until much later. So why start keeping such meticulous records so soon?
I'm surprised there are people here who are skeptical that long covid is real, as I know plenty of people in my community and social network who have been dealing with it.
There is national-level health guidance about long covid — I don't think it is very plausible that it is a simply "imaginary" problem:
https://www.cdc.gov/covid/long-term-effects/index.html
(2023)
probably up to ~1700 days about now since COVID isn't over.
Physics Girl on YouTube is still fighting it.
https://www.youtube.com/@physicsgirl
I do wonder how much of this is self-fulfilling atrophy. You're tired and sick, so you stay in bed. Then you get weak, making you more tired. Hopefully she can turn things around, regardless of underlying causes.
It sounds like for cases like hers, trying and pushing yourself to exercise only makes you weaker, not stronger. If you're curious, her channel has a number of videos about this.
Yeah, she was so active and productive and engaging as a youtube content creator. She is one of my favorites! So it's just stunning to see how profound whatever is happening for her is. She went from bright and engaging to basically a state of profound depression (I mean this in a physical sense.)
Hopefully she finds out the whole picture some day, makes a recovery, and will do an extensive retrospective.
it's definitely an interesting topic, because my skeptical mind is easily split in one of two ways-
either 1) it's a real phenomena that is under-diagnosed and ignored by medical professionals (something I believe happens) or 2) it's not a real condition and patients who suffer from it are suffering from a mix of mental illness combined with other real diseases that are exacerbated (something that I believe happens)
both sound like very real, very possible problems, and neither one seems more likely to me than the other. Or perhaps it's a big mix of both, on a case by case basis.
I don't have long Covid I think, but in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection. It is a very odd virus.
> in april I got sick (some kind of flu, but my covid tests were all expired and dry and I couldn't test). Since then I have had many light headaches, but annoying enough to cause bad quality sleep and degrading cognitive thought processes. The GP suspects it is some kind of result of a possible COVID infection
That's long COVID.
I would like to see more scientific study on the matter.
I suspect it is probably a real, but rare thing, and that the vast majority of suspected cases are largely due to physical inactivity.
I myself had my first infection in March 2024 and had "lung capacity" issues for several months afterwards (~November 2024). I saw doctors about it, but they were largely dismissive, stating I needed to do more exercise, when I was in reasonably top physical shape (MMA 4x a week).
I felt like I was on my own, took charge, did my own research. What seemed to end up helping and get the "junk" out of my lungs was regularly using a spirometer on my own and, perhaps not wise, doing intense (as best I could muster) runs, which would cause me to cough up some of the awful-tasting fluid.
It ended up working out well for me and I'm back to my former capacity.
I don't think people get how difficult it can be to interact with doctors when you have a chronic illness.
In high school, I started to get debilitating joint pain. I had trouble walking, typing, or writing. I went to many (at least a dozen) doctors. Most of them were unsympathetic and accused me of trying to get access to pain pills. Or told me that "this is just what puberty is like." Eventually, I happened upon _one_ doctor who gave me some blood tests and I tested positive for Celiac disease. Treating that fixed my joint pain.
Celiac disease is not a rare disease--it affects 1% of the US population--yet most of the doctors I saw didn't even think to test for it, despite join pain being a typical symptom. Instead, they gaslit me into thinking that it was "all in my head." Clearly they were wrong, and I have the blood test and endoscopy to prove it!
I'm a member of a "Young people with chronic illness" meetup, and my story is absolutely the norm. People who have conditions with clear and measurable diagnosis criteria go through many doctors telling them nothing is wrong before they find a doctor who will run tests. I can only imagine how much worse it is for conditions which are diagnosed "by exclusion" or something else that's not cut-and-dried.
I really wish that Tech people would not go outside of our purview to comment on medicine. Knowledge about how to build and maintain software does not give us any useful intuitions or insights into medicine, but the gigantic egos in this industry turn us all into pundits about what other professions are doing wrong. Stop trying to second guess and cherry pick medical studies that you half read.
Reminds me of this article that was on here ages ago
https://news.ycombinator.com/item?id=13851015
Very important to raise awareness of LC! Covid isn't over!
I think (hope?) we all agree that awareness of "long-covid" is important. But it's also entirely orthogonal to designations of a pathogen as being "over" or "not over".
Coronaviruses have been with humanity for a very long time, and people have been reporting post-infection syndromes surrounding them - and have been ignored or downplayed - for decades now.
There are five endemic coronaviruses, all of which likely started as an epidemic (two are documented of course) and evolved into what we call a "common cold", with susceptible populations suffering outsized effects.
Now that we've finally (and I think we can say, successfully) achieved endemic equilibrium from covid-19, it's important not to lose compassion for those still suffering (and to perhaps bring awareness online regarding this syndrome going back a long time - some have been suffering for many years).
We have not achieved equilibrium. There is wave after wave, and people are getting increasingly disabled. The virus continues to mutate but we have dropped our defenses.
Viruses become "mild" when they kill enough people for natural selection to take effect. That has not happened.
Is this also your assessment of hku1? How about h3n2?
Is it? Why?
There are a lot of things for people to think about.
I think it's important because a lot of people still don't know what it entails.
For example, you say "cancer" and everyone has an idea of what that is. As of the 2000s/2010s, awareness has been rising about mental health and what it actually means to have mental illness. But if you say "long covid", most people still don't know what that really means to a sufferer of it. With its relative commonness compared to other, rarer yet more well-known illnesses (like DID), I'd say it deserves more attention than it gets.
If we think of public disease messaging as having limited "bandwidth", it makes sense to message about the most common, newest, and least understood diseases, wouldn't you agree?
The more the public understands what having an illness means for its sufferer, the more understanding the public will be of that person's needs and limitations, and thus the fuller a life that person will be able to live as their limitations are accommodated.
I think learning the specific names and details is a waste of time. That is important information for the patient and their doctor, but not the general public.
It doesnt add any value over the alternative of people having an unspecified chronic disease and requesting X accommodation, especially as accommodations needed or desired vary wildly
To your point, people know the word "cancer" but have no clue what it entails or what accommodations a specific person needs or wants.
People can march around raising cancer awareness, but it is also a pointless performative act for the benefit of the performer.
If you have a sick person in your life and want to be compassionate, figure out what accommodation they actually want or need.
Because most know someone that has had covid. Then still its not public knowledge it can be as debilitating as it is, even IQ loss and brain fog effect should be better understood by the public as well.
Plus its not well researched so we should at least be trying to get the symptoms that are proven out there so we can get more information on it