8 ms·

I think taking most illnesses seriously is wise, particularly so today as Covid has been around a shorter period of time and the long term effects are less know

I think taking most illnesses seriously is wise, particularly so today as Covid has been around a shorter period of time and the long term effects are less known. What I’m curious about is how does the frequency of “long-Covid” compare to other post-viral syndromes? Having various forms of malaise, lethargy, and other health problems after an illness is not a new phenomenon. Does this affect 1 in 100 or 1 in 100,000 people severely? How does this compare with say past flus? It’s hard to compare long Covid to anything without a basis for comparison. I’ve had the flu before and was a physical wreck for about 6 months after until my body finally snapped back. Because it was pre-Covid times, I just sucked it up and focused on struggling through my day and then resting. I can easily imagine people going through something similar today, and because everybody is scared because of the media, we’re looking for a problem and labeling it rather than just generally sucking it up. (This isn’t to say that we shouldn’t work to understand and treat this problem, just that it might not be anything significantly different than all prior human experience) How much of the concern over “long-Covid” is simply a byproduct of psychology? We may be fixated on a problem and looking for it and therefore finding it more even though it’s not necessarily any more common of a problem. Maybe a direct comparison with other viruses shows different, but this is the comparison I’d like to see to better understand the risk-management here.

nicoburns 5y ago
I feel like it might be more that we weren’t concerned I’m about post-viral symptoms enough in the past than that we are overly concerned with them now. ME and Chronic Fatigue and similar can be life changing (in a bad way), but are not at all well understood, often dismissed as being in peoples heads, and do not have effective treatments. Long-covid is an increase in prevalence, and also does seem to present some unique symptoms.
- Diggsey 5y ago
  > Long-covid is an increase in prevalence, and also does seem to present some unique symptoms. Is it though? That data is exactly what the commenter above is asking for, and I've also not seen any data comparing prevalence of long covid to long-lasting side effects of other diseases. > I feel like it might be more that we weren’t concerned I’m about post-viral symptoms enough in the past than that we are overly concerned with them now. ME and Chronic Fatigue and similar can be life changing (in a bad way) Being in a car crash can be life changing in a bad way (if not life ending) and yet most of us choose to get in cars on a regular basis. My point is that the severity alone is not useful: you can only make an informed decision knowing both severity and the probability of a particular outcome. Nowadays we are constantly bombarded with things fighting for our attention. Everyone is "raising awareness" for something, but as humans we are very limited in the things we can be constantly vigilent about. The only rational response is to prioritise the things that most warrant consideration, and ignore everything else. Long covid is a particularly pointless thing to be aware of, because it's not like any sane person chooses to get covid, so the risk calculation is already two steps divorced from the actions we can actually take to avoid it.
  - nicoburns 5y ago
    Even if prevalence per case is the same as flu; covid would still at least double the overall societal prevalence due to it being in addition to flu. Regarding awareness, I meant more societal awareness such that we might direct funding towards it as we have done with cancers.
    - __blockcipher__ 5y ago
      > Even if prevalence per case is the same as flu; covid would still at least double the overall societal prevalence due to it being in addition to flu. This sounds true if you don’t think long and hard about it, but actually the mechanics of viral spread are not quite that simple. For example there’s the phenomenom of interferon-mediated “viral interference” where infection with virus X wards off infection from virus Y (say, the influenza strain de jeur), which is thought to be attributable to acute upregulation of the innate immune system. So, it’s not always quite so simple.
      - throwanem 5y ago
        Pedant's note: the phrase is "du jour", French for "of the day".
    - sokoloff 5y ago
      I sure hope that medical research funding decisions are driven by medical experts looking at data, not by any level of societal awareness (positive or negative).
      - nicoburns 5y ago
        A lot of medical funding is from charities like Cancer Research which get their money from the general public. Public awareness plays a big part in which of these charities get funding.
  - ihodes 5y ago
    In case you're curious about Long Covid vs Long Flu https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1003773#sec016 https://journals.plos.org/plosmedicine/article?id=10.1371/jo...
- LudwigNagasena 5y ago
  If this is true, why is the medical science such a dumpster fire why is nobody trying to fix it?
  - dennis_jeeves1 5y ago
    Because that is essentially the state of affairs in all human endeavors. Medicine is more prone to it, because they can always claim a new 'variant' or exception to the rule when a treatment/intervention does not work. Medical college also filters for conformists who have a large debt to pay once out of medical school.
    - unmole 5y ago
      > Medical college also filters for conformists who have a large debt to pay once out of medical school. I don't think that is true for most of Europe.
      - dennis_jeeves1 5y ago
        I agree, it's lot better in Europe.
2muchcoffeeman 5y ago
> What I’m curious about is how does the frequency of “long-Covid” compare to other post-viral syndromes? Having various forms of malaise, lethargy, and other health problems after an illness is not a new phenomenon. Does this affect 1 in 100 or 1 in 100,000 people severely? How does this compare with say past flus? It’s hard to compare long Covid to anything without a basis for comparison. Well it's only year 3 of the pandemic and we are on our 4th variant. Is it even possible to get reliable, steady long term data?
- cjbgkagh 5y ago
  You can ballpark it based on similar viruses, long covid is CFS/ME/Dysautonomia which is known to occur after harsh viruses at a rate of around 10-20%. It's knowable in research but doctors and public institutions are very slow to pick it up. Just look at how little was done with CFS/ME and how much medical gaslighting is still going on even though very clear diagnostic tools now exist.
  - prutschman 5y ago
    Could you expand on the available diagnostic tools a bit?
    - cjbgkagh 5y ago
      Retina capillaries by Berlin Cures - who make BC007. Dr Ron Davis has a capillary check under fingernails and a metabolic check that test plasma. Immunoassays, I forget the actual marker but done by CellTrend Max exertion test for Post Exertional Malaise (PEM). While such a test is cheaper it could result in worsening of fatigue. Tilt table test for POTs.
MaximumYComb 5y ago
I had post-viral syndrome from glandular fever when I was ~32. It sucked. Like you, I was a wreck for 6 months. It took 2-3 years before I could exercise properly but my life was decent enough at the 12 month mark. My research at the time indicated that rates of post-viral syndromes vary by disease. Glandular fever is known to cause it in 10-20% of adults who fall sick.
coolso 5y ago
- c-cube 5y ago
  Have you heard of the Spanish flu? It made a little bit of a splash a century ago...
  - jrockway 5y ago
    COVID reporting doesn't seem much different to me than other pandemic reporting. I read about SARS. I read about MERS. I read about Coronavirus in its early days in exactly the same way (and thought exactly the same thing, "interesting curiosity, that sounds like it really sucks for some other country"). The difference is that this time, it started killing Americans in America, so got a little bit more attention than some weird disease in Hong Kong or the Middle East.
llamataboot 5y ago
I would tend to agree that this is probably in the realm of post-viral CFIDS/ME/POTS/etc - I had nearly 10 years of dealing with fatigue/tachycardia/blood pressure issues/etc/etc/etc after an intense bout of mono and then an intense bout of lyme disease. I haven't seen any numbers, and this general area of symptoms does get pretty blurry (and has many weird rabbitholes - for me methyl-b12 injections for a year worked amazing - for someone else? maybe not)
fragmede 5y ago
Respectfully, no. I had Covid-19 in March 2020 and had long covid and... "just suck it up and push through" is basically the worst possible advice. Saying it causes fatigue just doesn't describe how utterly disabling it can be. I would get tired walking from my bedroom to the kitchen and I live in a small apartment. When I would push through, I'd be bedridden for days after. Seriously! We're talking too exhausted to have Netflix on in the background, not even watching it. I'm sure it's not psychosomatic because this was all new at the time, and I was far too exhausted for months after to even just surf the Internet. The most disabling part of the illness was learning that I can't just "push through" without paying for it for days afterwards. For months after, a single beer and a big meal would lay me out. You don't usually think of digesting food as strenuous, but in my weakened state, I'd start seeing stars and almost black out. Now, it would be easy to dismiss me, blame me for not being healthier, but when young athletes who are fit have having these symptoms, and doctors (with better access to healthcare then I) are recording their own symptoms as scientists, it's not made up. The worst part of having long covid is people (including doctors!) who don't believe long covid is real. Thankfully for long covid, there are biomarkers that can be tested for now so unbelievers don't have to take it on faith. After the medical gaslighting I've experienced, I really feel for people that suffer from fibromyalgia or other mysterious un-seeable maladies that there are not tests for.
- logicalmonster 5y ago
  I believe that what you describe is your genuine experience. For you, long-covid has been a very big deal. That wasn’t really the question though. The question isn’t, is long-covid a gut punch to anybody? It sure does seem to be so. The question is how many people is it affecting very badly, and is it radically different than other post-viral syndromes like flu sufferers have? Im trying to put the risk profile in proper context that I can understand. If for example ordinary influenza has an effect as bad as yours in say 1 in 500,000 patients, and Covid has an effect like that in say 1 in 400,000 patients, we can start to put the risk into a proper context that people can understand. That’s the type of clear and digestible comparison that I think we’re missing.
  - whatshisface 5y ago
ornornor 5y ago
> What I’m curious about is how does the frequency of “long-Covid” Doesn’t the article say 20–30% of people get some form of it, dropping by 50% for breakthrough (getting Covid despite being fully vaccinated) cases?

nicoburns 5y ago

I feel like it might be more that we weren’t concerned I’m about post-viral symptoms enough in the past than that we are overly concerned with them now. ME and Chronic Fatigue and similar can be life changing (in a bad way), but are not at all well understood, often dismissed as being in peoples heads, and do not have effective treatments. Long-covid is an increase in prevalence, and also does seem to present some unique symptoms.

Diggsey 5y ago
> Long-covid is an increase in prevalence, and also does seem to present some unique symptoms. Is it though? That data is exactly what the commenter above is asking for, and I've also not seen any data comparing prevalence of long covid to long-lasting side effects of other diseases. > I feel like it might be more that we weren’t concerned I’m about post-viral symptoms enough in the past than that we are overly concerned with them now. ME and Chronic Fatigue and similar can be life changing (in a bad way) Being in a car crash can be life changing in a bad way (if not life ending) and yet most of us choose to get in cars on a regular basis. My point is that the severity alone is not useful: you can only make an informed decision knowing both severity and the probability of a particular outcome. Nowadays we are constantly bombarded with things fighting for our attention. Everyone is "raising awareness" for something, but as humans we are very limited in the things we can be constantly vigilent about. The only rational response is to prioritise the things that most warrant consideration, and ignore everything else. Long covid is a particularly pointless thing to be aware of, because it's not like any sane person chooses to get covid, so the risk calculation is already two steps divorced from the actions we can actually take to avoid it.
- nicoburns 5y ago
  Even if prevalence per case is the same as flu; covid would still at least double the overall societal prevalence due to it being in addition to flu. Regarding awareness, I meant more societal awareness such that we might direct funding towards it as we have done with cancers.
  - __blockcipher__ 5y ago
    > Even if prevalence per case is the same as flu; covid would still at least double the overall societal prevalence due to it being in addition to flu. This sounds true if you don’t think long and hard about it, but actually the mechanics of viral spread are not quite that simple. For example there’s the phenomenom of interferon-mediated “viral interference” where infection with virus X wards off infection from virus Y (say, the influenza strain de jeur), which is thought to be attributable to acute upregulation of the innate immune system. So, it’s not always quite so simple.
    - throwanem 5y ago
      Pedant's note: the phrase is "du jour", French for "of the day".
  - sokoloff 5y ago
    I sure hope that medical research funding decisions are driven by medical experts looking at data, not by any level of societal awareness (positive or negative).
    - nicoburns 5y ago
      A lot of medical funding is from charities like Cancer Research which get their money from the general public. Public awareness plays a big part in which of these charities get funding.
- ihodes 5y ago
  In case you're curious about Long Covid vs Long Flu https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1003773#sec016 https://journals.plos.org/plosmedicine/article?id=10.1371/jo...
LudwigNagasena 5y ago
If this is true, why is the medical science such a dumpster fire why is nobody trying to fix it?
- dennis_jeeves1 5y ago
  Because that is essentially the state of affairs in all human endeavors. Medicine is more prone to it, because they can always claim a new 'variant' or exception to the rule when a treatment/intervention does not work. Medical college also filters for conformists who have a large debt to pay once out of medical school.
  - unmole 5y ago
    > Medical college also filters for conformists who have a large debt to pay once out of medical school. I don't think that is true for most of Europe.
    - dennis_jeeves1 5y ago
      I agree, it's lot better in Europe.

2muchcoffeeman 5y ago

> What I’m curious about is how does the frequency of “long-Covid” compare to other post-viral syndromes? Having various forms of malaise, lethargy, and other health problems after an illness is not a new phenomenon. Does this affect 1 in 100 or 1 in 100,000 people severely? How does this compare with say past flus? It’s hard to compare long Covid to anything without a basis for comparison. Well it's only year 3 of the pandemic and we are on our 4th variant. Is it even possible to get reliable, steady long term data?

cjbgkagh 5y ago
You can ballpark it based on similar viruses, long covid is CFS/ME/Dysautonomia which is known to occur after harsh viruses at a rate of around 10-20%. It's knowable in research but doctors and public institutions are very slow to pick it up. Just look at how little was done with CFS/ME and how much medical gaslighting is still going on even though very clear diagnostic tools now exist.
- prutschman 5y ago
  Could you expand on the available diagnostic tools a bit?
  - cjbgkagh 5y ago
    Retina capillaries by Berlin Cures - who make BC007. Dr Ron Davis has a capillary check under fingernails and a metabolic check that test plasma. Immunoassays, I forget the actual marker but done by CellTrend Max exertion test for Post Exertional Malaise (PEM). While such a test is cheaper it could result in worsening of fatigue. Tilt table test for POTs.

MaximumYComb 5y ago

I had post-viral syndrome from glandular fever when I was ~32. It sucked. Like you, I was a wreck for 6 months. It took 2-3 years before I could exercise properly but my life was decent enough at the 12 month mark. My research at the time indicated that rates of post-viral syndromes vary by disease. Glandular fever is known to cause it in 10-20% of adults who fall sick.

coolso 5y ago

c-cube 5y ago
Have you heard of the Spanish flu? It made a little bit of a splash a century ago...
- jrockway 5y ago
  COVID reporting doesn't seem much different to me than other pandemic reporting. I read about SARS. I read about MERS. I read about Coronavirus in its early days in exactly the same way (and thought exactly the same thing, "interesting curiosity, that sounds like it really sucks for some other country"). The difference is that this time, it started killing Americans in America, so got a little bit more attention than some weird disease in Hong Kong or the Middle East.

llamataboot 5y ago

I would tend to agree that this is probably in the realm of post-viral CFIDS/ME/POTS/etc - I had nearly 10 years of dealing with fatigue/tachycardia/blood pressure issues/etc/etc/etc after an intense bout of mono and then an intense bout of lyme disease. I haven't seen any numbers, and this general area of symptoms does get pretty blurry (and has many weird rabbitholes - for me methyl-b12 injections for a year worked amazing - for someone else? maybe not)

fragmede 5y ago

Respectfully, no. I had Covid-19 in March 2020 and had long covid and... "just suck it up and push through" is basically the worst possible advice. Saying it causes fatigue just doesn't describe how utterly disabling it can be. I would get tired walking from my bedroom to the kitchen and I live in a small apartment. When I would push through, I'd be bedridden for days after. Seriously! We're talking too exhausted to have Netflix on in the background, not even watching it. I'm sure it's not psychosomatic because this was all new at the time, and I was far too exhausted for months after to even just surf the Internet. The most disabling part of the illness was learning that I can't just "push through" without paying for it for days afterwards. For months after, a single beer and a big meal would lay me out. You don't usually think of digesting food as strenuous, but in my weakened state, I'd start seeing stars and almost black out. Now, it would be easy to dismiss me, blame me for not being healthier, but when young athletes who are fit have having these symptoms, and doctors (with better access to healthcare then I) are recording their own symptoms as scientists, it's not made up. The worst part of having long covid is people (including doctors!) who don't believe long covid is real. Thankfully for long covid, there are biomarkers that can be tested for now so unbelievers don't have to take it on faith. After the medical gaslighting I've experienced, I really feel for people that suffer from fibromyalgia or other mysterious un-seeable maladies that there are not tests for.

logicalmonster 5y ago
I believe that what you describe is your genuine experience. For you, long-covid has been a very big deal. That wasn’t really the question though. The question isn’t, is long-covid a gut punch to anybody? It sure does seem to be so. The question is how many people is it affecting very badly, and is it radically different than other post-viral syndromes like flu sufferers have? Im trying to put the risk profile in proper context that I can understand. If for example ordinary influenza has an effect as bad as yours in say 1 in 500,000 patients, and Covid has an effect like that in say 1 in 400,000 patients, we can start to put the risk into a proper context that people can understand. That’s the type of clear and digestible comparison that I think we’re missing.
- whatshisface 5y ago

ornornor 5y ago

> What I’m curious about is how does the frequency of “long-Covid” Doesn’t the article say 20–30% of people get some form of it, dropping by 50% for breakthrough (getting Covid despite being fully vaccinated) cases?