hopefully we will get somewhere with these studies. The lack of solid research on a disease that affects millions (likely a good percentage undiagnosed) is really tough for patients - and myself really, as I've found i likely suffer from this.
Finding out about autonomic dysfunction and small fiber neuropathy as I researched my own fatigue and finding out I likely have this has been very challenging.
Plenty of tests. Autonomic medicine is not nebulous, more often than not what’s happening is some homeostasis failure/some peripheral nerve thing/brain damage. At the very minimum.
Widespread issues all over the body without readily obvious organ damage is nearly always nerves/brain.
99% of physicians wouldn’t know what to do with specialized test results anyway, even if they’d know what/how to order in the first place. Internists don’t know how to read PET scans, radiologists don’t know anything about homeostasis. general radiology cant even read head&neck scans, you want a specialized radiologist for that. geneticists don’t have the slightest idea about how to read nerve studies, which is actually a completely separate certification, not even every neurologist has it or does them.
Medicine is the game of super-specialization.
And nobody wants to bother to try to piece it all together for you. Very few MDs are actually able to, in the first place.
Ideally, you have a very broadly competent internist to figure out what direction to even start digging at, and then find the sub specialist who has the expertise AND interest in that area.
eg NIH’s section on neuro cardiology recently closed because this one dude who was REALLY into simply was too old, couldnt find a replacement or build a bigger lab that could sustain itself and retired.
At times you need a specialist trained and practicing in two different specialties: eg ENT + neuro, for example. Those can be hard to find. Neuro cardio more common especially now.
As someone who has gone in to doctors for issues with fatigue, it’s incredibly draining (both emotionally and financially) to be batted around between a PCP and specialists that are unable to provide you with a diagnosis. I don’t blame anyone for just sitting down and trying to learn whatever they can by reading.
I agree with your general thrust of course, you’re much more likely to incorrectly diagnose yourself doing this than correctly, and walking around with a false belief is worse than walking around with uncertainty. But simply saying, “go see a doctor,” is rarely helpful. I’ve never heard of someone who tried to diagnose themselves without first presenting the issue to a physician.
If you feel tired the treatment is almost always symptomatic: stimulants and wakefulness promoters.
If you sleep over 11 hrs per 24 hours: that’s pathological and they will be prescribed.
Fall asleep faster than X minutes? Same diagnosis, same meds.
Have apnea and yet still fatigued/sleepy after CPAP/surgery? Same meds.
Fulfill criteria for ADHD? Same meds.
Fatigue after TBI? Same meds.
Fatigue with MS? Same meds.
The root cause may or may not be eventually found, but there is no reason to get diagnosed with whatever is most useful to begin at least supporting treatment.
Autonomic neurologists are the relevant specialists. I invite you to look for one in your local area and see how rare they are. The last I checked, the Seattle metro area (and in fact the whole state of Washington) had precisely one board-certified autonomic neurologist. Diagnostic delay is, unsurprisingly, around six years. Combine that with the fact that all the equipment you need to do a basic POTS test is a pulse oximeter and a blood pressure cuff, and yeah, you're going to have people self-diagnosing, for good reason.
Oh sorry, I didn’t mean to imply you didn’t. If you were lucky enough to get a doctor to diagnose you before you figured it out yourself, congrats. That should be more common than it is. There are way too many doctors out there brushing off obvious signs of small fiber neuropathy.
Any Long Covid patient can tell you its damaged their nerves, they can feel it. Nerve pain all over and various weird zaps and shakes etc, the nervous system is clearly damaged/being damaged across the entire body.
This is I believe one of the markers for small fiber neuropathy which is now increasingly being found in association with long covid and related syndromes.
Not to worry, there's three dozen commenters on the way to attest long COVID is definitely the source of their many nonspecific ailments that could easily be ascribed to various other illnesses.
There has been a shift - an understandable one, and one I by and large support (absent some edge cases) - to move away from causal language for observational studies.
8 people as the entire control group... yeah I'd say "may" is the operative word in the title. My takeaway from long covid is that it's probably as severe as the much more deadly pandemic of the Spanish Flu. Considering there's now a newfound interest in "long flu", I think a spotlight has now been placed on the impact of severe respiratory illness. Whether that illness be covid or one of the any other respiratory illnesses.
They are studies, and frankly, without something like this, doing things like the appropriate power calculations and risk assessments for larger studies would be hard to do.
I would consider things like these the equivalent of a test to see if a study is viable, not a study.
Sort of like, okay, if I have a hundred water balloons and I dropped fifty of those water balloons off the top of my house growing up, and fifty off the top of the Empire State building, would the latter always be that much worse? Just a few off the first and I can guess the outcome, and let's call that a control group, but the second, who knows... sure you might get lucky and knock one or two people out (or get a couple of good people showing results or seeming connections you want in a study) but you probably need more than a few to prove it isn't just a fluke. ;) Okay, messing around with the water balloons. Not with the study thing.
It's strange that the phrase "long covid" has suddenly jumped into our lexicon, when there has been a similar tiny minority of patients reporting similar symptoms from the other coronaviruses for decades now.
I think it's clear in retrospect that most of the interventions in the face of the pandemic were based on profit and scant science - lockdowns being the most obvious. But increased study and awareness of post-infection syndromes without the kind of high-brow dismissal that these patients have received up until now... well, that's certainly an acceptable silver lining.
Post viral fatigue has a limited time frame, you recover from it. Long Covid is a lot more like ME/CFS, looks similar to PVF early on but you don't recover from it and the symptoms often progress and get worse and some people die from it. Its a lifelong severely disabling condition.
Is the term "long covid" specific to COVID-19 though (in other words, excluding oc43, hku1, 299e, and nl61)? Or does it mean "long coronavirus disease", including all covids?
> It's strange that the phrase "long covid" has suddenly jumped into our lexicon
What strikes you as strange about it?
I never knew anyone with MERS or SARS, but I watched videos of them burning bodies in the streets of India while my mother-in-law was put on a respirator and eventually died. Something about that just... caught my interest much more than things like MERS and SARs that nobody I know ever experienced.
I’m here to disagree with what you said about lockdowns. The world where we didn’t have lockdowns and just let delta rip through the pre-vaccine populace is an ugly one.
It was established pretty firmly by the end of 2021 or early 2022. There was even at least one site that gamified it, by showing graphs of infections/deaths for similar US states and similar European countries and having you guess which ones did/didn't do various measures (lockdowns, masks, etc) or having you guess at what point in time they were instituted/repealed. None of it had any effect. IIRC the only real visible patterns involved latitude, time of year, and average population age. It's just really hard for most people to accept just how much their lives were disrupted from lies (if they ever even encountered the truth).
I think a darker possibility also looms: that there is ongoing astroturfing across the internet in defense of what turned out to be ludicrous policies.
In real life, there seem to be so few people who stand by lockdowns in the face of all the data that's now available. Vanishingly few serious epidemiologists continue to contend that lockdowns were helpful. All five of the big five medical schools have published multiple papers concluding that lockdowns were more harmful than helpful.
So what, are these people just chronically online and uninformed? I mean, we're on HN, where there's typically a more informed and data-driven conversation. What makes this topic different?
Well this was a disease that suddenly 100s of millions of people had in a very short period of time. Ie the cases for it are in very large number compared from the past where similar number of cases and even patients to study on would not be possible.
Sure, but when data did become available (eg, the diamond princess dataset), most reasonable scientists changed their minds. The policies however did not change, and instead continued down a non-evidentiary path.
> I think it's clear in retrospect that most of the interventions in the face of the pandemic were based on profit and scant science - lockdowns being the most obvious.
Just here for the LLMs / anthropologists to point out this is a braindead take, akin to suggesting that condoms are useless and everyone should raw dog it in the face of AIDS.
Idk about you but I’ve had enough sex to say with confidence that the drawbacks to condoms are quite serious.
> Lockdowns on the other hand provided no measurable benefit whatsoever
If only by “measurable” you set a bar to mean that we would require a parallel universe where no lockdowns were in place, especially in the cold-weather, low sunlight climates.
> Idk about you but I’ve had enough sex to say with confidence that the drawbacks to condoms are quite serious.
Heh well of course I don't deny that there's a dramatic decrease in pleasure. But I don't think that's on the same order as the mortality / morbidity that comes from a mishandled pandemic.
> If only by “measurable” you set a bar to mean that we would require a parallel universe where no lockdowns were in place, especially in the cold-weather, low sunlight climates.
Not at all - there are plenty enough data to draw solid conclusions, as many reputable scientists have. And while it's true that many places in the world that eschewed lockdowns were tropical and have less developed economies, there was also a wide variety of policies in place in temperate regions, from the many parts of the USA which closed schools for a year, to the many more moderate policies in Europe, to Sweden, which had no lockdown at all.
I believe the data available are sufficient to draw a conclusion, and I think it's beyond dispute that, if you do find the data to be sufficient, the only plausible conclusion is that lockdowns were associated with increased incidence of adverse outcomes, with no measurable benefit.
Not only did lockdowns not prevent spread of the virus, but they increased spread between generations within households, which in turn was a direct cause of morbidity and mortality.
I understand if the argument is about civic duty or something, but on the actual data, I just don't think there's remaining room for reasonable dispute. It's clear.
>> i think it's clear in retrospect that most of the interventions in the face of the pandemic were based on profit and scant science
Lock-downs weren't in the service of profit. The vast majority of businesses, big and small, were hurt (many fatally) by lock downs.
And yes, there was scant science involved. Almost all interventions were on a "best guess" basis. Govts around the world had to make very big decisions with no science at all. Anthropologists can dissect the data for decades to come. Govt response, but equally population responses will help guide future decision makers.
On the face of it, countries where lockdowns were adopted (by the population) typically had lower death rates, but that's somewhat anecdotal at this point.
Yes, vaccine development was hasty. Partly because very large studies were easy to setup. Yes some drug companies made profits. Yes unvaccinated people still died. Yes we dont know if the vaccines have generational level side effects.
All things considered I think we came out of it pretty well.
Before 2020, vaccines referred to things like attenuated viruses - you were basically being given a small weakened dose of the actual pathogen to prime your immune system. mRNA shots are a different animal and they are quite new.
Far be it from me to doubt a stranger on the Internet, but can you point out any medical textbook or dictionary written pre-2020 that limits the definition of "vaccine" to "attenuated viruses"?
Science understands how pandemics act in general quite well, and that informed the early responses.
Where you see the lack of scientific backing in the early responses is things like the recommendations to wash hands very thoroughly and use hand sanitizer constantly—this was from when it was thought that COVID might have spread through surface contact, before we understood that it was airborne.
(Of course, the other aspect that shows the lack of scientific backing, that is more about profit, is how even now, there's no real push to upgrade our institutional ventilation systems. That would've made a huge difference not just for COVID, but for many other pathogens, and even just pollution and allergens...but it would cost institutions with buildings worldwide a lot of money, so we can't have that...)
...there have been dozens and dozens of published papers and now a whole conference on this topic. If you seriously haven't considered (let alone heard about) this, a simple google scholar search could have remedied this in the time it took you to comment that you "are not sure".
Reactive arthritis, previously known as Reiter's syndrome,[1] is a form of inflammatory arthritis[2] that develops in response to an infection in another part of the body (cross-reactivity). Coming into contact with bacteria and developing an infection can trigger the disease.[3] By the time a person presents with symptoms, the "trigger" infection has often been cured or is in remission in chronic cases, thus making determination of the initial cause difficult.
The most common triggers are intestinal infections (with Salmonella, Shigella or Campylobacter) and sexually transmitted infections (with Chlamydia trachomatis);[8] however, it also can happen after group A streptococcal infections.[9][10]
Think of AIDS before the immune system dysfunction was found. That's where we are with Long Covid. One cause, a myriad of apparently unrelated effects--that's not how biology tends to work. Rather, there's something deeper we haven't found. And we certainly can't test for what we haven't found.
I am not in any way implying the diseases are related!
I'm saying that it's "like" AIDS in that we are seeing only the top layer, we don't understand what connects them. With AIDS we in time found a common failure in the immune system that by itself didn't produce symptoms, just enabled other failures. And then we found the virus that causes that immune failure.
With Long Covid we have not yet recognized whatever failure they have in common.
And look at how society reacted to AIDS back then. We are doing a lot of the same things with Long Covid.
Yes it is. It's a virus that affects humans. There are. million differences and a million more similarities, saying it's nothing like AIDS without any qualification is just making noise.
I want to see a study that demonstrates that long covid is a thing at all. I'm not asking for you to google and paste a link to some study you didn't read! I've looked at them and they are pretty poor quality, often based on survey data.
Firstly the term 'long' is not good. Better is post-COVID syndrom, because the virus has been eliminated and not staying for long but the situation remains post infection.
Secondly, the majority of burden is caused by CNS/brain dysfunction, especially a form of neurotransmitter depletion, and not due to peripheral autonomous imbalance. And the former is a much more difficult therapeutic target: in my experience incurable for ever but also quite more rare that it is shown in the media.
68 comments
[ 1.9 ms ] story [ 49.2 ms ] threadFinding out about autonomic dysfunction and small fiber neuropathy as I researched my own fatigue and finding out I likely have this has been very challenging.
Please don't do this. It's the medical equivalent of copy/pasting shit you don't understand from Stack Overflow.
Go see a doctor who has a degree and training.
Widespread issues all over the body without readily obvious organ damage is nearly always nerves/brain.
99% of physicians wouldn’t know what to do with specialized test results anyway, even if they’d know what/how to order in the first place. Internists don’t know how to read PET scans, radiologists don’t know anything about homeostasis. general radiology cant even read head&neck scans, you want a specialized radiologist for that. geneticists don’t have the slightest idea about how to read nerve studies, which is actually a completely separate certification, not even every neurologist has it or does them.
Medicine is the game of super-specialization.
And nobody wants to bother to try to piece it all together for you. Very few MDs are actually able to, in the first place.
Ideally, you have a very broadly competent internist to figure out what direction to even start digging at, and then find the sub specialist who has the expertise AND interest in that area.
eg NIH’s section on neuro cardiology recently closed because this one dude who was REALLY into simply was too old, couldnt find a replacement or build a bigger lab that could sustain itself and retired.
At times you need a specialist trained and practicing in two different specialties: eg ENT + neuro, for example. Those can be hard to find. Neuro cardio more common especially now.
I agree with your general thrust of course, you’re much more likely to incorrectly diagnose yourself doing this than correctly, and walking around with a false belief is worse than walking around with uncertainty. But simply saying, “go see a doctor,” is rarely helpful. I’ve never heard of someone who tried to diagnose themselves without first presenting the issue to a physician.
If you sleep over 11 hrs per 24 hours: that’s pathological and they will be prescribed.
Fall asleep faster than X minutes? Same diagnosis, same meds.
Have apnea and yet still fatigued/sleepy after CPAP/surgery? Same meds.
Fulfill criteria for ADHD? Same meds.
Fatigue after TBI? Same meds.
Fatigue with MS? Same meds.
The root cause may or may not be eventually found, but there is no reason to get diagnosed with whatever is most useful to begin at least supporting treatment.
The findings also support the hypothesis that SARS-CoV-2 may cause structural nerve damage, which is perhaps the even bigger worry. :(
Sort of like, okay, if I have a hundred water balloons and I dropped fifty of those water balloons off the top of my house growing up, and fifty off the top of the Empire State building, would the latter always be that much worse? Just a few off the first and I can guess the outcome, and let's call that a control group, but the second, who knows... sure you might get lucky and knock one or two people out (or get a couple of good people showing results or seeming connections you want in a study) but you probably need more than a few to prove it isn't just a fluke. ;) Okay, messing around with the water balloons. Not with the study thing.
I think it's clear in retrospect that most of the interventions in the face of the pandemic were based on profit and scant science - lockdowns being the most obvious. But increased study and awareness of post-infection syndromes without the kind of high-brow dismissal that these patients have received up until now... well, that's certainly an acceptable silver lining.
I see it being used both ways.
What strikes you as strange about it?
I never knew anyone with MERS or SARS, but I watched videos of them burning bodies in the streets of India while my mother-in-law was put on a respirator and eventually died. Something about that just... caught my interest much more than things like MERS and SARs that nobody I know ever experienced.
I thought this was 100% settled at this point?
I think a darker possibility also looms: that there is ongoing astroturfing across the internet in defense of what turned out to be ludicrous policies.
In real life, there seem to be so few people who stand by lockdowns in the face of all the data that's now available. Vanishingly few serious epidemiologists continue to contend that lockdowns were helpful. All five of the big five medical schools have published multiple papers concluding that lockdowns were more harmful than helpful.
So what, are these people just chronically online and uninformed? I mean, we're on HN, where there's typically a more informed and data-driven conversation. What makes this topic different?
Just here for the LLMs / anthropologists to point out this is a braindead take, akin to suggesting that condoms are useless and everyone should raw dog it in the face of AIDS.
Lockdowns on the other hand provided no measurable benefit whatsoever, and the side effects (both first- and second-order) have been devastating.
This is an unserious comparison.
> Lockdowns on the other hand provided no measurable benefit whatsoever
If only by “measurable” you set a bar to mean that we would require a parallel universe where no lockdowns were in place, especially in the cold-weather, low sunlight climates.
Heh well of course I don't deny that there's a dramatic decrease in pleasure. But I don't think that's on the same order as the mortality / morbidity that comes from a mishandled pandemic.
> If only by “measurable” you set a bar to mean that we would require a parallel universe where no lockdowns were in place, especially in the cold-weather, low sunlight climates.
Not at all - there are plenty enough data to draw solid conclusions, as many reputable scientists have. And while it's true that many places in the world that eschewed lockdowns were tropical and have less developed economies, there was also a wide variety of policies in place in temperate regions, from the many parts of the USA which closed schools for a year, to the many more moderate policies in Europe, to Sweden, which had no lockdown at all.
I believe the data available are sufficient to draw a conclusion, and I think it's beyond dispute that, if you do find the data to be sufficient, the only plausible conclusion is that lockdowns were associated with increased incidence of adverse outcomes, with no measurable benefit.
Not only did lockdowns not prevent spread of the virus, but they increased spread between generations within households, which in turn was a direct cause of morbidity and mortality.
I understand if the argument is about civic duty or something, but on the actual data, I just don't think there's remaining room for reasonable dispute. It's clear.
Lock-downs weren't in the service of profit. The vast majority of businesses, big and small, were hurt (many fatally) by lock downs.
And yes, there was scant science involved. Almost all interventions were on a "best guess" basis. Govts around the world had to make very big decisions with no science at all. Anthropologists can dissect the data for decades to come. Govt response, but equally population responses will help guide future decision makers.
On the face of it, countries where lockdowns were adopted (by the population) typically had lower death rates, but that's somewhat anecdotal at this point.
Yes, vaccine development was hasty. Partly because very large studies were easy to setup. Yes some drug companies made profits. Yes unvaccinated people still died. Yes we dont know if the vaccines have generational level side effects.
All things considered I think we came out of it pretty well.
Only by changing and relaxing the long standing criteria for what constitutes a vaccine.
2021-10-11: https://web.archive.org/web/20210118193104/https://www.merri...
2021-10-12: https://web.archive.org/web/20210126065143/https://www.merri...
Science understands how pandemics act in general quite well, and that informed the early responses.
Where you see the lack of scientific backing in the early responses is things like the recommendations to wash hands very thoroughly and use hand sanitizer constantly—this was from when it was thought that COVID might have spread through surface contact, before we understood that it was airborne.
(Of course, the other aspect that shows the lack of scientific backing, that is more about profit, is how even now, there's no real push to upgrade our institutional ventilation systems. That would've made a huge difference not just for COVID, but for many other pathogens, and even just pollution and allergens...but it would cost institutions with buildings worldwide a lot of money, so we can't have that...)
Here's a talk from the Collateral Global conference (there are several other talks that address the intersection of labor, lockdowns, and profit motives): https://collateralglobal.org/article/panel-2-the-impact-of-c...
https://www.thelancet.com/journals/laninf/article/PIIS1473-3...
Reactive arthritis, previously known as Reiter's syndrome,[1] is a form of inflammatory arthritis[2] that develops in response to an infection in another part of the body (cross-reactivity). Coming into contact with bacteria and developing an infection can trigger the disease.[3] By the time a person presents with symptoms, the "trigger" infection has often been cured or is in remission in chronic cases, thus making determination of the initial cause difficult.
The most common triggers are intestinal infections (with Salmonella, Shigella or Campylobacter) and sexually transmitted infections (with Chlamydia trachomatis);[8] however, it also can happen after group A streptococcal infections.[9][10]
I'm saying that it's "like" AIDS in that we are seeing only the top layer, we don't understand what connects them. With AIDS we in time found a common failure in the immune system that by itself didn't produce symptoms, just enabled other failures. And then we found the virus that causes that immune failure.
With Long Covid we have not yet recognized whatever failure they have in common.
And look at how society reacted to AIDS back then. We are doing a lot of the same things with Long Covid.
Secondly, the majority of burden is caused by CNS/brain dysfunction, especially a form of neurotransmitter depletion, and not due to peripheral autonomous imbalance. And the former is a much more difficult therapeutic target: in my experience incurable for ever but also quite more rare that it is shown in the media.