6 ms·

Covid-19: What do we know about “long Covid”?

38 points by nico_h 6y ago

nico_h 6y ago
"nearly nine in 10 patients (87%) discharged from a Rome hospital after recovering from covid-19 were still experiencing at least one symptom 60 days after onset. " I don't understand how this illness is not taken more seriously in the west given how little we know about it and what little we know tell us it's not a recover / die kind of illness and more like a bell curve with recover / suffer forever / die and suffer forever seems to be the fat part of it.,
- ketamine__ 6y ago
  Wouldn't you expect long-term side effects from hospitalization that likely involved a ventilator and sedation? Not an expert here. Maybe someone else can chime in?
  - rtlfe 6y ago
    IIRC ~20% of covid hospital patients were on ventilators at the beginning of the pandemic, and that has gone down as we've learned more about treatment. You can't assume that people were on ventilators just because they were hospitalized.
  - jointpdf 6y ago
    This is presumably only one aspect of “long Covid”, but a study [0] that was making the rounds a couple weeks ago found this (quoted from the accompanying editorial)[1]: > ”In 100 recovering patients included in the study, 67% of whom recovered at home, evaluated a mean of 71 days after confirmed COVID-19 diagnosis, 78% had demonstrable cardiac involvement via cardiac magnetic resonance imaging, 76% had detectable high-sensitivity troponin, and 60% had evidence of active myocardial inflammation by abnormal native T1 and T2.” > ”...if this high rate of risk is confirmed, the pathologic basis for progressive left ventricular dysfunction is validated, and especially if longitudinal assessment reveals new-onset heart failure in the recovery phase of COVID-19, then the crisis of COVID-19 will not abate but will instead shift to a new de novo incidence of heart failure and other chronic cardiovascular complications.” In other words, even mild cases of Covid-19 are very frequently resulting in heart inflammation and other forms of cardiac injury. [0]: https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916 https://jamanetwork.com/journals/jamacardiology/fullarticle/... [1]: https://jamanetwork.com/journals/jamacardiology/fullarticle/2768915 https://jamanetwork.com/journals/jamacardiology/fullarticle/... [2]: (another editorial, easier read) https://www.statnews.com/2020/07/27/covid19-concerns-about-lasting-heart-damage/ https://www.statnews.com/2020/07/27/covid19-concerns-about-l...
- 627467 6y ago
  Where do you get the information that "suffer forever or die" is the fat part of it? In my anecdotal acquaintances none of the 5 cases I know of (2 with mild hospitalizations of just over a week) fall under that "fat" part of the curve
  - rtlfe 6y ago
    > Where do you get the information that "suffer forever or die" is the fat part of it? Presumably they're referring to the 87% number that they quoted. But importantly that's 87% of hospitalized patients, and only a small minority of cases are hospitalized, so the number doesn't say much about the typical case.
    - nico_h 6y ago
      yeah, I might have misread that . There was the interview with Mr Topol in the Nautilus link earlier on here that mentioned 10% to 80% suffer from Long COVID, so I searched and found this article. However, there is anecdata that non-hospitalized patients also suffer from Long COVID as seen in this thread. I would be interested in more broad exploration of the real scale of this aspect of the illness.
- throwaway122378 6y ago
  87% of patients experienced at least ONE symptom TWO MONTHS after onset... COUGH... there’s one symptom
- bllguo 6y ago
  we have a general inability to deal with long-term, insidious effects of all kinds. This holds for covid, it holds for global warming, it holds for economics (see US shortsightedness w.r.t the semiconductor industry). It's baked into the political system and into our culture. People have far too simplistic a relationship with time.
  - gnusty_gnurc 6y ago
    > People have far too simplistic a relationship with time This sounds like projection. I think humanity has a very complicated relationship with time and does handle long-term risk more than you're giving credit.
- SpicyLemonZest 6y ago
  Hospitalized pneumonia patients are generally told to expect 3-6 months for a full recovery. I don't mean to imply that's good, of course it's a terrible thing to experience, but it's just not surprising that people hospitalized for a serious infection would show persistent symptoms. What concerns doctors is persistent symptoms among patients that were never hospitalized and symptoms not typical of pneumonia.
- djsumdog 6y ago
  Because the vast majority of these patients were old, and the elderly often have lasting symptoms from any serious infection. Any viral infection can cause long term issues if you have a compromised immune system or are elderly. I've read the UK case study which had 60+ subjects and many of those under 60 were listed as "high risk" professions (they didn't list the professions due to privacy, but I'm guessing it's likely front like health care with high exposure amounts). The biggest source of transmission is still the home. You're around someone who is breathing out large viral load. This might be why we're seeing the huge uptakes in Texas, Florida and Southern California: people indoors all the time because air conditioning. There are other diseases with long term effects in only some people: Ticks and Limes disease is a good example. I think we might be seeing something similar to Limes here.
rgacote 6y ago
Welcome to the newest "pre-existing condition" in American health care.
hprotagonist 6y ago
More and more it's clear to me that the appropriate historical analog to Covid19 is not the spanish flu. It's polio.
- legerdemain 6y ago
  Notably, there is still no curative treatment for polio. If you do contract it, it's still a roll of the dice whether you recover fully or develop paralysis.
  - hprotagonist 6y ago
    and a ~10% CFR, whoof.
    - SpicyLemonZest 6y ago
      Although a direct comparison is hard, because most polio cases are believed to be asymptomatic but broad screening is less common.
      - hprotagonist 6y ago
        well, the first part of that's shared, anyway.
woke_neolib 6y ago
The reports of pulmonary, neurological, and cardiac damage are pretty troubling. Ed Yong's Atlantic article about long-haulers is excellent: https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/ https://www.theatlantic.com/health/archive/2020/06/covid-19-... Eric Topol's twitter is an excellent source for Covid science coverage: https://twitter.com/EricTopol https://twitter.com/EricTopol
latchkey 6y ago
If you're interested in or even doubting the long term effects, follow one of the larger (91k+ and growing) survivor groups [0]. It is anecdotal, but the stories are very real and quite intense. Even odd things that you don't hear about in the news, like excessive burping [1] and of course, the heart breaking children tag [2]. You don't want this thing if you can help it. [0] https://www.facebook.com/groups/COVID19survivorcorps/ https://www.facebook.com/groups/COVID19survivorcorps/ [1] https://www.facebook.com/groups/COVID19survivorcorps/search/?query=burping&epa=SEARCH_BOX https://www.facebook.com/groups/COVID19survivorcorps/search/... [2] https://www.facebook.com/groups/669615740453955/post_tags/?post_tag_id=704593920289470 https://www.facebook.com/groups/669615740453955/post_tags/?p...
- amscanne 6y ago
  > It is anecdotal, but the stories are very real and quite intense. They are all real, in the sense that they are stories being told, but I think deriving any kind of conclusion from that kind of forum is not a great idea. Self-diagnosis (of the particular “long term effect”), general misinformation and paranoia, and self-selection into an online forum of like-minded folks seems to produce consistently misleading results. If you pointed to an anti-vaccination forum, you’d also see a lot of certain people with real stories.
  - DoreenMichele 6y ago
    Selection bias is also a huge issue. I most likely had it in March. It seems to have reduced my symptoms from some other long-standing issue. I hesitate to mention that at all because I already get so very much unwarranted hatred. My only point is that press coverage is already biased and survivor groups explicitly are aimed at collecting up people having a hard time. I don't know how we make real progress. I do know most "support groups" are horrible shit shows where you can't do any real good for fear of being accused of "victim blaming." Social garbage is a huge barrier to doing anything good for any health issue.
  - latchkey 6y ago
    Correct about drawing conclusions, which is why I mentioned that it is anecdotal. That said, before I mentioned it, had you heard about the burping issue? I sure hadn't. This is all grain of salt, but given how novel this thing is... pretty much the only information we have to go on at this point is from forums like this. Therefore, I think it is a valuable resource that should not just be discarded or ignored. Over time, this will of course get distilled down into real medical research and studies, but it is still interesting to listen to today.
DoreenMichele 6y ago
We really need two things: 1. Better systems for preventing transmission of disease generally as our cultural default. 2. Better models for helping people genuinely recover, something modern medicine doesn't actually address for most diseases. We have physical therapy for certain injuries. We don't really seem to have something similar for infections. We think just treating the infection per se is all we need to do. We generally do not school people on how to resolve the issues left behind from antibiotic use, chemotherapy, etc.
- nico_h 6y ago
  1: Masks! that seems to work. 2: Physiotherapy? Yoga? 3: there are articles about rehabilitation centers for ex-covid patients, in europe + UK at least.
  - DoreenMichele 6y ago
    1. Are you suggesting masks as a cultural norm for all eternity? I hope not. I'm talking about sustainable permanent changes. I like contactless takeout, like Little Caesar's pizza portal as one example. 2. Neither of those are for infections per se. 3. Thanks. I will look for such, but it probably sucks if the past 55 years of my life is anything to judge by.
    - nfoz 6y ago
      > 1. Are you suggesting masks as a cultural norm for all eternity? I hope not. Well in some Asian cultures it was already normalized to wear a mask when you have any kind of symptoms of anything contagious. I was hoping that convention would move west even before this pandemic happened -- so I hope it stays with us.
      - DoreenMichele 6y ago
        I think we are already far too accepting of the idea that it's just normal to be germy and ill. I wish that expectation would change. I don't think it has to be that way.
dariusj18 6y ago
I know of at least one "long hauler." The descriptions they give are horrific.

38 points by nico_h 6y ago

"nearly nine in 10 patients (87%) discharged from a Rome hospital after recovering from covid-19 were still experiencing at least one symptom 60 days after onset. " I don't understand how this illness is not taken more seriously in the west given how little we know about it and what little we know tell us it's not a recover / die kind of illness and more like a bell curve with recover / suffer forever / die and suffer forever seems to be the fat part of it.,

ketamine__ 6y ago
Wouldn't you expect long-term side effects from hospitalization that likely involved a ventilator and sedation? Not an expert here. Maybe someone else can chime in?
- rtlfe 6y ago
  IIRC ~20% of covid hospital patients were on ventilators at the beginning of the pandemic, and that has gone down as we've learned more about treatment. You can't assume that people were on ventilators just because they were hospitalized.
- jointpdf 6y ago
  This is presumably only one aspect of “long Covid”, but a study [0] that was making the rounds a couple weeks ago found this (quoted from the accompanying editorial)[1]: > ”In 100 recovering patients included in the study, 67% of whom recovered at home, evaluated a mean of 71 days after confirmed COVID-19 diagnosis, 78% had demonstrable cardiac involvement via cardiac magnetic resonance imaging, 76% had detectable high-sensitivity troponin, and 60% had evidence of active myocardial inflammation by abnormal native T1 and T2.” > ”...if this high rate of risk is confirmed, the pathologic basis for progressive left ventricular dysfunction is validated, and especially if longitudinal assessment reveals new-onset heart failure in the recovery phase of COVID-19, then the crisis of COVID-19 will not abate but will instead shift to a new de novo incidence of heart failure and other chronic cardiovascular complications.” In other words, even mild cases of Covid-19 are very frequently resulting in heart inflammation and other forms of cardiac injury. [0]: https://jamanetwork.com/journals/jamacardiology/fullarticle/2768916 https://jamanetwork.com/journals/jamacardiology/fullarticle/... [1]: https://jamanetwork.com/journals/jamacardiology/fullarticle/2768915 https://jamanetwork.com/journals/jamacardiology/fullarticle/... [2]: (another editorial, easier read) https://www.statnews.com/2020/07/27/covid19-concerns-about-lasting-heart-damage/ https://www.statnews.com/2020/07/27/covid19-concerns-about-l...
627467 6y ago
Where do you get the information that "suffer forever or die" is the fat part of it? In my anecdotal acquaintances none of the 5 cases I know of (2 with mild hospitalizations of just over a week) fall under that "fat" part of the curve
- rtlfe 6y ago
  > Where do you get the information that "suffer forever or die" is the fat part of it? Presumably they're referring to the 87% number that they quoted. But importantly that's 87% of hospitalized patients, and only a small minority of cases are hospitalized, so the number doesn't say much about the typical case.
  - nico_h 6y ago
    yeah, I might have misread that . There was the interview with Mr Topol in the Nautilus link earlier on here that mentioned 10% to 80% suffer from Long COVID, so I searched and found this article. However, there is anecdata that non-hospitalized patients also suffer from Long COVID as seen in this thread. I would be interested in more broad exploration of the real scale of this aspect of the illness.
throwaway122378 6y ago
87% of patients experienced at least ONE symptom TWO MONTHS after onset... COUGH... there’s one symptom
bllguo 6y ago
we have a general inability to deal with long-term, insidious effects of all kinds. This holds for covid, it holds for global warming, it holds for economics (see US shortsightedness w.r.t the semiconductor industry). It's baked into the political system and into our culture. People have far too simplistic a relationship with time.
- gnusty_gnurc 6y ago
  > People have far too simplistic a relationship with time This sounds like projection. I think humanity has a very complicated relationship with time and does handle long-term risk more than you're giving credit.
SpicyLemonZest 6y ago
Hospitalized pneumonia patients are generally told to expect 3-6 months for a full recovery. I don't mean to imply that's good, of course it's a terrible thing to experience, but it's just not surprising that people hospitalized for a serious infection would show persistent symptoms. What concerns doctors is persistent symptoms among patients that were never hospitalized and symptoms not typical of pneumonia.
djsumdog 6y ago
Because the vast majority of these patients were old, and the elderly often have lasting symptoms from any serious infection. Any viral infection can cause long term issues if you have a compromised immune system or are elderly. I've read the UK case study which had 60+ subjects and many of those under 60 were listed as "high risk" professions (they didn't list the professions due to privacy, but I'm guessing it's likely front like health care with high exposure amounts). The biggest source of transmission is still the home. You're around someone who is breathing out large viral load. This might be why we're seeing the huge uptakes in Texas, Florida and Southern California: people indoors all the time because air conditioning. There are other diseases with long term effects in only some people: Ticks and Limes disease is a good example. I think we might be seeing something similar to Limes here.

rgacote 6y ago

Welcome to the newest "pre-existing condition" in American health care.

hprotagonist 6y ago

More and more it's clear to me that the appropriate historical analog to Covid19 is not the spanish flu. It's polio.

legerdemain 6y ago
Notably, there is still no curative treatment for polio. If you do contract it, it's still a roll of the dice whether you recover fully or develop paralysis.
- hprotagonist 6y ago
  and a ~10% CFR, whoof.
  - SpicyLemonZest 6y ago
    Although a direct comparison is hard, because most polio cases are believed to be asymptomatic but broad screening is less common.
    - hprotagonist 6y ago
      well, the first part of that's shared, anyway.

woke_neolib 6y ago

The reports of pulmonary, neurological, and cardiac damage are pretty troubling. Ed Yong's Atlantic article about long-haulers is excellent: https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/ https://www.theatlantic.com/health/archive/2020/06/covid-19-... Eric Topol's twitter is an excellent source for Covid science coverage: https://twitter.com/EricTopol https://twitter.com/EricTopol

latchkey 6y ago

If you're interested in or even doubting the long term effects, follow one of the larger (91k+ and growing) survivor groups [0]. It is anecdotal, but the stories are very real and quite intense. Even odd things that you don't hear about in the news, like excessive burping [1] and of course, the heart breaking children tag [2]. You don't want this thing if you can help it. [0] https://www.facebook.com/groups/COVID19survivorcorps/ https://www.facebook.com/groups/COVID19survivorcorps/ [1] https://www.facebook.com/groups/COVID19survivorcorps/search/?query=burping&epa=SEARCH_BOX https://www.facebook.com/groups/COVID19survivorcorps/search/... [2] https://www.facebook.com/groups/669615740453955/post_tags/?post_tag_id=704593920289470 https://www.facebook.com/groups/669615740453955/post_tags/?p...

amscanne 6y ago
> It is anecdotal, but the stories are very real and quite intense. They are all real, in the sense that they are stories being told, but I think deriving any kind of conclusion from that kind of forum is not a great idea. Self-diagnosis (of the particular “long term effect”), general misinformation and paranoia, and self-selection into an online forum of like-minded folks seems to produce consistently misleading results. If you pointed to an anti-vaccination forum, you’d also see a lot of certain people with real stories.
- DoreenMichele 6y ago
  Selection bias is also a huge issue. I most likely had it in March. It seems to have reduced my symptoms from some other long-standing issue. I hesitate to mention that at all because I already get so very much unwarranted hatred. My only point is that press coverage is already biased and survivor groups explicitly are aimed at collecting up people having a hard time. I don't know how we make real progress. I do know most "support groups" are horrible shit shows where you can't do any real good for fear of being accused of "victim blaming." Social garbage is a huge barrier to doing anything good for any health issue.
- latchkey 6y ago
  Correct about drawing conclusions, which is why I mentioned that it is anecdotal. That said, before I mentioned it, had you heard about the burping issue? I sure hadn't. This is all grain of salt, but given how novel this thing is... pretty much the only information we have to go on at this point is from forums like this. Therefore, I think it is a valuable resource that should not just be discarded or ignored. Over time, this will of course get distilled down into real medical research and studies, but it is still interesting to listen to today.

DoreenMichele 6y ago

We really need two things: 1. Better systems for preventing transmission of disease generally as our cultural default. 2. Better models for helping people genuinely recover, something modern medicine doesn't actually address for most diseases. We have physical therapy for certain injuries. We don't really seem to have something similar for infections. We think just treating the infection per se is all we need to do. We generally do not school people on how to resolve the issues left behind from antibiotic use, chemotherapy, etc.

nico_h 6y ago
1: Masks! that seems to work. 2: Physiotherapy? Yoga? 3: there are articles about rehabilitation centers for ex-covid patients, in europe + UK at least.
- DoreenMichele 6y ago
  1. Are you suggesting masks as a cultural norm for all eternity? I hope not. I'm talking about sustainable permanent changes. I like contactless takeout, like Little Caesar's pizza portal as one example. 2. Neither of those are for infections per se. 3. Thanks. I will look for such, but it probably sucks if the past 55 years of my life is anything to judge by.
  - nfoz 6y ago
    > 1. Are you suggesting masks as a cultural norm for all eternity? I hope not. Well in some Asian cultures it was already normalized to wear a mask when you have any kind of symptoms of anything contagious. I was hoping that convention would move west even before this pandemic happened -- so I hope it stays with us.
    - DoreenMichele 6y ago
      I think we are already far too accepting of the idea that it's just normal to be germy and ill. I wish that expectation would change. I don't think it has to be that way.

dariusj18 6y ago

I know of at least one "long hauler." The descriptions they give are horrific.