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.
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]
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.
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.
>> 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.
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...)
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.
> 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.
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.
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.
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.
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.
Hard to treat symptoms with immunological conditions. I mean, there are vitamins and supplements, but noone is gonna generally hand out economy-sized bottles of controlled substances for exhaustion, etc.
These sorts of conditions are systemic, and the causes and ways of dealing with the accompanying syndromes are probably always going to be different from individual to individual (well, likely the exact physiological causes anyway).
It's true, this is why there are so many government agencies focused on healthcare. The medical field lacks a healthy profit motive. Healthcare CEOs use their fiduciary responsibilities as an excuse and say they'll get sued if they don't exploit situations.
There was a SARS vaccine as far as back 2016 which could have changed everything but was ignored. Pharmaceutical execs told them they were, "waiting to see if it comes back yearly" first
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.
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.
There's no such thing as "long COVID" specifically. Any serious viral infection has the potential to cause sequalae in susceptible patients for reasons that are still not well understood. Some of those are detectible in lab tests to an extent but there's no single clear diagnostic test.
It's long as in persistent viral colonization, often in immune privileged areas where the virus can hide from the immune system.
One theory is that the immune system doesn't always produce a strong enough antibody response to flush the virus from all these areas but the truth is that's likely only a subset of total cases.
they are pretty well understood now with growing evidence of viral persistence in the gut and immune cells, and immune dysfunction causing autoantibodies.
they are also distinct from other conditions like ME/CFS or other sequelae although they may share overlapping symptoms. A lot of research is going into different PAIS post acute infection syndromes
Interesting, then I guess the obvious next question is … is there a test for being a susceptible patient? We’ve been talking about long COVID for years now. Surely there’s some commonalities amongst the people who suffer from it.
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.
Nothing you can order from your doctor yet but plenty of abnormal findings in almost every aspect of the body. As far as I know none of the findings yet is found in every sufferer, a combination can often get to ~95% but its very heterogenous and that has made it very hard to come up with a single test.
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.
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.
Yeah, twelve patients and eight in the control group isn't really a study.
is a small proof of concept study not a study anymore? gastric biopsies aren’t exactly easy to obtain at scale.
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.
severity is only one factor in developing long covid.
https://www.thelancet.com/journals/laninf/article/PIIS1473-3...
Funny that reactive arthritis has been around for decades but no one dares call it "long chlamydia" I guess it doesn't sell YouTube clicks as well.
Usually they add “chronic” like chronic Lyme disease https://en.wikipedia.org/wiki/Chronic_Lyme_disease
wikipedia:
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]
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.
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.
Sweden had no lockdown and fared comparatively well.
>> 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.
For profit by those who it benefited, namely medical companies who made the so called vaccine.
Only by changing and relaxing the long standing criteria for what constitutes a vaccine.
In what way are they not a vaccine?
The definition of vaccine was broadened to include mRNA technologies.
It's not "no science at all".
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...)
Yeah, it's a rebranding of what we used to call "post-viral fatigue" or "post-viral syndrome", except specific to this one virus.
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.
> 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.
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.
I am not sure how lockdowns (millions of people not able to work) could be driven by profits.
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.
> as I researched my own fatigue and finding out I likely have this
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.
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.
If there's no test for it, then what is the doctor going to do for something as nebulous as long covid?
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.
It's probably more profitable to treat symptoms.
So far all the trials attempting to do so have failed. Its not that people aren't trying this, it just doesn't work for most of the symptoms.
Hard to treat symptoms with immunological conditions. I mean, there are vitamins and supplements, but noone is gonna generally hand out economy-sized bottles of controlled substances for exhaustion, etc.
These sorts of conditions are systemic, and the causes and ways of dealing with the accompanying syndromes are probably always going to be different from individual to individual (well, likely the exact physiological causes anyway).
It's true, this is why there are so many government agencies focused on healthcare. The medical field lacks a healthy profit motive. Healthcare CEOs use their fiduciary responsibilities as an excuse and say they'll get sued if they don't exploit situations.
There was a SARS vaccine as far as back 2016 which could have changed everything but was ignored. Pharmaceutical execs told them they were, "waiting to see if it comes back yearly" first
Wow mucosal innervation was around half in long covid patients - that's super worrying and would have nasty symptoms in practice.
The findings also support the hypothesis that SARS-CoV-2 may cause structural nerve damage, which is perhaps the even bigger worry. :(
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.
What kind of symptoms? I have insane stomach issues since early 2021 that only this year started to largely subside.
i noticed a thing with headlines like these: "x may cause y". Whenever it's "may" or "might", it's almost always meaningless
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.
small study yes, meaningless no
Only the Sith deal in absolutes.
Is there a test for long covid?
There's no such thing as "long COVID" specifically. Any serious viral infection has the potential to cause sequalae in susceptible patients for reasons that are still not well understood. Some of those are detectible in lab tests to an extent but there's no single clear diagnostic test.
It's long as in persistent viral colonization, often in immune privileged areas where the virus can hide from the immune system.
One theory is that the immune system doesn't always produce a strong enough antibody response to flush the virus from all these areas but the truth is that's likely only a subset of total cases.
they are pretty well understood now with growing evidence of viral persistence in the gut and immune cells, and immune dysfunction causing autoantibodies.
they are also distinct from other conditions like ME/CFS or other sequelae although they may share overlapping symptoms. A lot of research is going into different PAIS post acute infection syndromes
Isnt CFS notoriously post-viral?
evidence says yes, but bacteria and other antigens are being studied. ME/CFS shows antigen persistence like long covid has clearly shown.
https://www.nature.com/articles/s41467-024-45107-3
Interesting, then I guess the obvious next question is … is there a test for being a susceptible patient? We’ve been talking about long COVID for years now. Surely there’s some commonalities amongst the people who suffer from it.
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.
This is nothing like AIDS.
not quite. A grab bag of biomarkers being validated in research labs across the USA though
Nothing you can order from your doctor yet but plenty of abnormal findings in almost every aspect of the body. As far as I know none of the findings yet is found in every sufferer, a combination can often get to ~95% but its very heterogenous and that has made it very hard to come up with a single test.
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.