6 ms·

There's a popular opinion I've seen on HN that "long Covid" isn't a real phenomenon but it's pretty easy to reject that out of hand. There have been several st

There's a popular opinion I've seen on HN that "long Covid" isn't a real phenomenon but it's pretty easy to reject that out of hand. There have been several studies, including a recent quadruple blinded one (where participants, care providers, investigators and outcomes assessors are all blinded to treatment/control groups) that show some interventions have statistically significant benefits to treating it; https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00299-2/fulltext https://www.thelancet.com/journals/laninf/article/PIIS1473-3... It's obviously a real thing, post-viral syndrome/fatigue are well known illnesses and there's every reason to think some percentage of Covid cases would end up similarly.

cactusplant7374 3y ago
The intervention is Metformin during Covid onset?
- Auracle 3y ago
  For people who are overweight, it looks like. It makes one wonder if it would only work for them, or if long COVID affects them more.
- noodlenotes 3y ago
  I had the same question. Apparently people who had already been taking Metformin for diabetes were at lower risk of severe Covid [1], which explains why Metformin is being studied. Looks like the same authors found that Metformin as a treatment after Covid diagnosis did not significantly reduce the the risk of hospitalization or death, even though it does reduce incidence of long Covid. [1] https://www.covid19treatmentguidelines.nih.gov/therapies/miscellaneous-drugs/metformin/ https://www.covid19treatmentguidelines.nih.gov/therapies/mis... [2] https://www.nejm.org/doi/full/10.1056/NEJMoa2201662 https://www.nejm.org/doi/full/10.1056/NEJMoa2201662
  - mikeyouse 3y ago
    Yep - the long Covid endpoint was a secondary one that was added to the trial once people realized that might be an issue. The original trial was to see whether administering metformin / fluvoxamine / ivermectin would have any impact on disease severity. https://clinicaltrials.gov/study/NCT04510194?term=NCT04510194&rank=1 https://clinicaltrials.gov/study/NCT04510194?term=NCT0451019... Spoiler: "None of the three medications that were evaluated prevented the occurrence of hypoxemia, an emergency department visit, hospitalization, or death associated with Covid-19." [https://pubmed.ncbi.nlm.nih.gov/36070710/ https://pubmed.ncbi.nlm.nih.gov/36070710/] But they already had this population enrolled when Long Covid started becoming an issue, so they extended the study to see what impact the same 3 drugs would have on incidence of long covid.
Auracle 3y ago
I think there are a couple of things going on: Long COVID is real, but I bet most people that think they have it don’t. On the other hand, I doubt long COVID is all that novel compared to what happens with other viruses as well. I think there’s some pushback because the media acts like long COVID is some terribly novel and huge thing, when neither are probably true. All that said I’m glad more research is happening on this front. We might all get hit by some long term virus consequences over the course of our lives, or perhaps we all live with some constantly.
- bryanlarsen 3y ago
  Agreed. I have a friend who has Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome, which has destroyed her life, turning the most energetic person I knew into someone who cannot walk more than a block a day. Her ME was likely triggered by the H1N1 flu in 2009. It's too early to tell whether this is the same as long COVID, but it is certainly suggestive.
  - galangalalgol 3y ago
    My first thought upon hearing about it was that long covid seemed like a rather general autoimmune disorder. But the researchers all seemed very hesitant to label it as such. Perhaps just because they haven't isolated which antibodies are being elevated, but also perhaps there is a compounding effect from organ damage? The impact of viral loads will some day be viewed as what shaped history and held us back from faster progress.
    - whimsicalism 3y ago
      Researchers who suggest that there is a substantial psychosomatic component to CFS get death threats and have been forced to discontinue their research, so the field is sort of at an impasse because only physical (usually viral) explanations get any play which is fine because CFS is definitely partially caused by post-viral sequelae but you get crucified for suggesting there is a significant psychosomatic component.
  - 3y ago
BestGuess 3y ago
For real? Seems to me like the brain damage and stuff from the infection is pretty simple to understand so that'd be pretty real. From a sorta minimum idea thing that seems like the most solid and easy to understand long-term damage right? Easy to test too, I reckon. Why would people think that isn't real?
- adamlgerber 3y ago
  Because Long Covid is not a scientific term in the way most people use it. I've had many family members refer to having long covid because they had a persistent stuffy nose for a few months. Prob virus related to some degree but the looseness of the language makes invites skepticism. Also some people also love being very vocal about any possible pathology they might have as a political position. Just invites more skepticism.
  - BestGuess 3y ago
    Thanks for the info I haven't come across it as the post I responded to said around here. Just missed the discussions I guess plus I'm kinda new. I understand not liking how a term gets used yeah, creates more misunderstandings and myths. I gotcha.
  - conductr 3y ago
    I'm kind of one of those people. I'm a medical layman and saying "long covid" is kind of a meme/joke. I know it's not real long covid as some people are battling much harsher consequences from having had covid. But, what I'm trying to say in my layman way is, I feel like I get sick differently after having covid. It's more frequent and lasts way longer. I'm currently at the tail end of a ~4 week long "cold" during which it felt like I'd improve/regress each week and it varied from my being completely functional to having fairly bedridden days. It was all just a "common cold", I think; who knows I might have had covid again (I'm not getting tested each time I get sick any more). These "colds" have been happening roughly every 3-6 months the last couple years since I got covid. Prior to that, I'd get sick only about once a year and sometimes 2-3 times without getting sick. Duration of sickness previously was typically 3-5 days, very rarely ever >1 week. Not sure if it's related, but the time of year is off too. I almost never got sick in the summer months before. Where I live it's been above 100F most of the past several weeks and typically I get sick in shoulder season months (Nov-Dec / Feb-Mar for my locale).
DrBazza 3y ago
I have all of my running data on Garmin that shows pre and post COVID (at least 3 bouts). I'm now 90 seconds/km slower, doing the same volume and all other things being equal (except age). My diet hasn't changed, I walk the same distances, climb the same number of stairs, steps per day, weight is the same, etc. I just cannot get going. Laboured breathing, occasional randomly high heart rate at what would previously have been a LSR (long slow run) pace, where I'd been firmly in zone 3, now randomly hitting zone 5 for bit.
svnt 3y ago
There are some major qualifiers to this study: 1) The ages and BMI: > The median age was 45 years (IQR 37–54) and median BMI was 29·8 kg/m2 2) The diagnosis of long COVID-19 was done by survey — this has been shown to be an unreliable method of assessing persistent symptoms of disease. This is in part because people will tell you they have symptoms if you give them a cause and ask. The diversity of the claimed presentation of symptoms is an indicator (e.g. > 50 different symptoms by article-in-support [1]) 3) The hazard ratio 95% confidence interval extends to 0.99 when treatment is started within three days. This is not a strong result. 1.0 is no effect. [1] https://www.medicalnewstoday.com/articles/symptom-burden-survey-could-become-new-tool-to-assess-long-covid https://www.medicalnewstoday.com/articles/symptom-burden-sur...
- mikeyouse 3y ago
  This is partly what I was talking about. Just odd dismissals of actuals scientific evidence. It's a "major qualifier" that this study looked at middle aged overweight people? Or that they relied on a survey to assess symptoms but then quadruple blinded everyone? They added the long-covid assessment as a secondary endpoint to a group they were studying since before "long Covid" was a phenomenon. And then to dismiss the result because you apparently misread the CI for the hazard ratio? For those on metformin, it extends to 0.89 not to 0.99 -- and is centered at 0.59 with a P = 1.2%. You can obviosuly quibble about subgroup analysis but for the 3-day group, it's 0.37 [0.15 - 0.95]. That's a fairly strong result!
  - mft_ 3y ago
    > This is partly what I was talking about. Just odd dismissals of actuals scientific evidence. I've read (and heard first-hand) similar approaches by people with a (sometimes hidden) agenda to push. There's a lot of apparently "scientific" stuff out there, written confidently by people who ultimately aren't qualified, which is lapped up by those deep into the confirmation bias of whatever is topic is.
  - svnt 3y ago
    The problem is always in the simplification as it is translated into lay conversations. You cannot extrapolate from a median of obesity into the general population. This is especially true when the medication you are having success with (metformin) is a treatment for diabetes. What are they even measuring?
dmccarty 3y ago
Mostly agree with the other posters here. To add my own anecdotal piece, I had a majority of the 12 symptoms[1][2] defined as long covid. Got covid immediately in Northern Thailand, Dec 2019. Over the next 24 months I went from a healthy (perhaps hyper fit) 40-something male to someone who could barely drag himself to the gym, struggled to complete workouts, went through bouts of mental fog, heart arrythmias, chronic exhaustion, etc. Power outputs were down ~20% on pre- vs. post-covid tracked workouts. Doctors were unsympathetic, prescribed vitamin D for lack of sunlight. But it's impossible to know if "long covid" is causal vs. ancillary. I'm also 3 years older now, and who knows, maybe that's just part of life and the aging process. I'll say that what helped me the most was just consistently getting out of the house and getting exercise. I started small but it had its own compounding effects. I'm up to about 4 - 5 times per week now. Whether that's walking, running, lifting, or a even a Murph, every bit of exercise seems to have helped me down the (long) road to recovery. I'll probably never be back to my old fitness level, but things are at least better now. Long covid is as undefinable as it is real, but it can be beat imho. ymmv of course. Good luck to all who are struggling with this. [1] https://www.nih.gov/news-events/nih-research-matters/toward-deeper-understanding-long-covid https://www.nih.gov/news-events/nih-research-matters/toward-... [2] https://pubmed.ncbi.nlm.nih.gov/37278994/ https://pubmed.ncbi.nlm.nih.gov/37278994/
- BobbyTables2 3y ago
  [dead]
ryandrake 3y ago
Unfortunately, COVID has been irrevocably politicized to the point where mere mention of it produces a 100+ comment thread, so any topic that is even remotely related to COVID already has the battle lines drawn and each "side" stands ready to fight over it. It doesn't seem possible to have a un-politically-charged conversation about the reality of Long COVID because it is still not possible to have an uncharged conversation about COVID.
CommieBobDole 3y ago
I think it's real, I just don't think it's a particular Covid-specific thing. Infections and the immune response to them cause cellular damage, and that damage is different for different people because of a lot of factors - random chance, genetic predisposition, etc. I think this has always been a thing, but it wasn't always as noticeable because this happened to people sporadically as people got 'a cold' or 'the flu' which could have been any number of viruses. Now millions and millions of people have been infected with a fairly nasty coronavirus and the effects of this damage are showing up in large numbers. Anecdotally, I came down with probably-not-Covid a couple of months back (fit a lot of the symptoms, but never tested positive) and I've only recently gotten my normal energy levels back, and my sense of smell, which disappeared entirely for a few days, is still wonky.

cactusplant7374 3y ago

The intervention is Metformin during Covid onset?

Auracle 3y ago
For people who are overweight, it looks like. It makes one wonder if it would only work for them, or if long COVID affects them more.
noodlenotes 3y ago
I had the same question. Apparently people who had already been taking Metformin for diabetes were at lower risk of severe Covid [1], which explains why Metformin is being studied. Looks like the same authors found that Metformin as a treatment after Covid diagnosis did not significantly reduce the the risk of hospitalization or death, even though it does reduce incidence of long Covid. [1] https://www.covid19treatmentguidelines.nih.gov/therapies/miscellaneous-drugs/metformin/ https://www.covid19treatmentguidelines.nih.gov/therapies/mis... [2] https://www.nejm.org/doi/full/10.1056/NEJMoa2201662 https://www.nejm.org/doi/full/10.1056/NEJMoa2201662
- mikeyouse 3y ago
  Yep - the long Covid endpoint was a secondary one that was added to the trial once people realized that might be an issue. The original trial was to see whether administering metformin / fluvoxamine / ivermectin would have any impact on disease severity. https://clinicaltrials.gov/study/NCT04510194?term=NCT04510194&rank=1 https://clinicaltrials.gov/study/NCT04510194?term=NCT0451019... Spoiler: "None of the three medications that were evaluated prevented the occurrence of hypoxemia, an emergency department visit, hospitalization, or death associated with Covid-19." [https://pubmed.ncbi.nlm.nih.gov/36070710/ https://pubmed.ncbi.nlm.nih.gov/36070710/] But they already had this population enrolled when Long Covid started becoming an issue, so they extended the study to see what impact the same 3 drugs would have on incidence of long covid.

Auracle 3y ago

I think there are a couple of things going on: Long COVID is real, but I bet most people that think they have it don’t. On the other hand, I doubt long COVID is all that novel compared to what happens with other viruses as well. I think there’s some pushback because the media acts like long COVID is some terribly novel and huge thing, when neither are probably true. All that said I’m glad more research is happening on this front. We might all get hit by some long term virus consequences over the course of our lives, or perhaps we all live with some constantly.

bryanlarsen 3y ago
Agreed. I have a friend who has Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome, which has destroyed her life, turning the most energetic person I knew into someone who cannot walk more than a block a day. Her ME was likely triggered by the H1N1 flu in 2009. It's too early to tell whether this is the same as long COVID, but it is certainly suggestive.
- galangalalgol 3y ago
  My first thought upon hearing about it was that long covid seemed like a rather general autoimmune disorder. But the researchers all seemed very hesitant to label it as such. Perhaps just because they haven't isolated which antibodies are being elevated, but also perhaps there is a compounding effect from organ damage? The impact of viral loads will some day be viewed as what shaped history and held us back from faster progress.
  - whimsicalism 3y ago
    Researchers who suggest that there is a substantial psychosomatic component to CFS get death threats and have been forced to discontinue their research, so the field is sort of at an impasse because only physical (usually viral) explanations get any play which is fine because CFS is definitely partially caused by post-viral sequelae but you get crucified for suggesting there is a significant psychosomatic component.
- 3y ago

BestGuess 3y ago

For real? Seems to me like the brain damage and stuff from the infection is pretty simple to understand so that'd be pretty real. From a sorta minimum idea thing that seems like the most solid and easy to understand long-term damage right? Easy to test too, I reckon. Why would people think that isn't real?

adamlgerber 3y ago
Because Long Covid is not a scientific term in the way most people use it. I've had many family members refer to having long covid because they had a persistent stuffy nose for a few months. Prob virus related to some degree but the looseness of the language makes invites skepticism. Also some people also love being very vocal about any possible pathology they might have as a political position. Just invites more skepticism.
- BestGuess 3y ago
  Thanks for the info I haven't come across it as the post I responded to said around here. Just missed the discussions I guess plus I'm kinda new. I understand not liking how a term gets used yeah, creates more misunderstandings and myths. I gotcha.
- conductr 3y ago
  I'm kind of one of those people. I'm a medical layman and saying "long covid" is kind of a meme/joke. I know it's not real long covid as some people are battling much harsher consequences from having had covid. But, what I'm trying to say in my layman way is, I feel like I get sick differently after having covid. It's more frequent and lasts way longer. I'm currently at the tail end of a ~4 week long "cold" during which it felt like I'd improve/regress each week and it varied from my being completely functional to having fairly bedridden days. It was all just a "common cold", I think; who knows I might have had covid again (I'm not getting tested each time I get sick any more). These "colds" have been happening roughly every 3-6 months the last couple years since I got covid. Prior to that, I'd get sick only about once a year and sometimes 2-3 times without getting sick. Duration of sickness previously was typically 3-5 days, very rarely ever >1 week. Not sure if it's related, but the time of year is off too. I almost never got sick in the summer months before. Where I live it's been above 100F most of the past several weeks and typically I get sick in shoulder season months (Nov-Dec / Feb-Mar for my locale).

DrBazza 3y ago

I have all of my running data on Garmin that shows pre and post COVID (at least 3 bouts). I'm now 90 seconds/km slower, doing the same volume and all other things being equal (except age). My diet hasn't changed, I walk the same distances, climb the same number of stairs, steps per day, weight is the same, etc. I just cannot get going. Laboured breathing, occasional randomly high heart rate at what would previously have been a LSR (long slow run) pace, where I'd been firmly in zone 3, now randomly hitting zone 5 for bit.

svnt 3y ago

There are some major qualifiers to this study: 1) The ages and BMI: > The median age was 45 years (IQR 37–54) and median BMI was 29·8 kg/m2 2) The diagnosis of long COVID-19 was done by survey — this has been shown to be an unreliable method of assessing persistent symptoms of disease. This is in part because people will tell you they have symptoms if you give them a cause and ask. The diversity of the claimed presentation of symptoms is an indicator (e.g. > 50 different symptoms by article-in-support [1]) 3) The hazard ratio 95% confidence interval extends to 0.99 when treatment is started within three days. This is not a strong result. 1.0 is no effect. [1] https://www.medicalnewstoday.com/articles/symptom-burden-survey-could-become-new-tool-to-assess-long-covid https://www.medicalnewstoday.com/articles/symptom-burden-sur...

mikeyouse 3y ago
This is partly what I was talking about. Just odd dismissals of actuals scientific evidence. It's a "major qualifier" that this study looked at middle aged overweight people? Or that they relied on a survey to assess symptoms but then quadruple blinded everyone? They added the long-covid assessment as a secondary endpoint to a group they were studying since before "long Covid" was a phenomenon. And then to dismiss the result because you apparently misread the CI for the hazard ratio? For those on metformin, it extends to 0.89 not to 0.99 -- and is centered at 0.59 with a P = 1.2%. You can obviosuly quibble about subgroup analysis but for the 3-day group, it's 0.37 [0.15 - 0.95]. That's a fairly strong result!
- mft_ 3y ago
  > This is partly what I was talking about. Just odd dismissals of actuals scientific evidence. I've read (and heard first-hand) similar approaches by people with a (sometimes hidden) agenda to push. There's a lot of apparently "scientific" stuff out there, written confidently by people who ultimately aren't qualified, which is lapped up by those deep into the confirmation bias of whatever is topic is.
- svnt 3y ago
  The problem is always in the simplification as it is translated into lay conversations. You cannot extrapolate from a median of obesity into the general population. This is especially true when the medication you are having success with (metformin) is a treatment for diabetes. What are they even measuring?

dmccarty 3y ago

Mostly agree with the other posters here. To add my own anecdotal piece, I had a majority of the 12 symptoms[1][2] defined as long covid. Got covid immediately in Northern Thailand, Dec 2019. Over the next 24 months I went from a healthy (perhaps hyper fit) 40-something male to someone who could barely drag himself to the gym, struggled to complete workouts, went through bouts of mental fog, heart arrythmias, chronic exhaustion, etc. Power outputs were down ~20% on pre- vs. post-covid tracked workouts. Doctors were unsympathetic, prescribed vitamin D for lack of sunlight. But it's impossible to know if "long covid" is causal vs. ancillary. I'm also 3 years older now, and who knows, maybe that's just part of life and the aging process. I'll say that what helped me the most was just consistently getting out of the house and getting exercise. I started small but it had its own compounding effects. I'm up to about 4 - 5 times per week now. Whether that's walking, running, lifting, or a even a Murph, every bit of exercise seems to have helped me down the (long) road to recovery. I'll probably never be back to my old fitness level, but things are at least better now. Long covid is as undefinable as it is real, but it can be beat imho. ymmv of course. Good luck to all who are struggling with this. [1] https://www.nih.gov/news-events/nih-research-matters/toward-deeper-understanding-long-covid https://www.nih.gov/news-events/nih-research-matters/toward-... [2] https://pubmed.ncbi.nlm.nih.gov/37278994/ https://pubmed.ncbi.nlm.nih.gov/37278994/

BobbyTables2 3y ago
[dead]

ryandrake 3y ago

Unfortunately, COVID has been irrevocably politicized to the point where mere mention of it produces a 100+ comment thread, so any topic that is even remotely related to COVID already has the battle lines drawn and each "side" stands ready to fight over it. It doesn't seem possible to have a un-politically-charged conversation about the reality of Long COVID because it is still not possible to have an uncharged conversation about COVID.

CommieBobDole 3y ago

I think it's real, I just don't think it's a particular Covid-specific thing. Infections and the immune response to them cause cellular damage, and that damage is different for different people because of a lot of factors - random chance, genetic predisposition, etc. I think this has always been a thing, but it wasn't always as noticeable because this happened to people sporadically as people got 'a cold' or 'the flu' which could have been any number of viruses. Now millions and millions of people have been infected with a fairly nasty coronavirus and the effects of this damage are showing up in large numbers. Anecdotally, I came down with probably-not-Covid a couple of months back (fit a lot of the symptoms, but never tested positive) and I've only recently gotten my normal energy levels back, and my sense of smell, which disappeared entirely for a few days, is still wonky.