4 ms·

How is everyone so sure 12 month+ symptoms are due to COVID-19? Yes, I accept 3-4 month coughs and brain fog can be attributed (many papers on this, it is also

by fny 4y ago

How is everyone so sure 12 month+ symptoms are due to COVID-19? Yes, I accept 3-4 month coughs and brain fog can be attributed (many papers on this, it is also well documented with the flu). Yes, I accept chronic issues evolving from pre-existing conditions and severe illness. However, we had 100M people in the US alone be infected with a virus in a two year span. Many people develop chronic fatigue, mental illness, and hosts of othe syndromes in normal times often without clear cause. These symptoms are at times written off as "made up" as well. It's extremely human to attribute the origin of inexplicable disease to a foreign agent like COVID just as much as people often search for the origins of their suffering in food, relationships, and other facets of life, but these are often not causal. To complicate matters further, COVID presented tremendous stressors beyond the illness itself: fear of COVID, lockdowns, social isolation, disruption in work/schooling, social pressures around reopening and beliefs, inflation. People died. Routines were disrupted. Lives were upended. The environment these past two years were a breeding ground for affective disorders. I only bring this up because a decade ago my mother began to suffer from fatigue and aches that to this day are a complete mystery. She was diagnosed with fibromyalgia which affects 2-4% of the population. Had this happened during COVID, she would have sworn on her life her symptoms were due to COVID. Even I would have agreed. Again, the scale and immediacy of COVID is wild. The entire world got sick at the same time. That's at least 600M people globally, 100M of those in the US. This means 1 in 100K and 1 in 1M events will happen. Now blend that with the natural incidence of every neurological and mental disorder... yikes.

rcthompson 4y ago
> How is everyone so sure 12 month+ symptoms are due to COVID-19? Our lab at Mount Sinai has linked gene expression patterns observed during acute SARS-CoV-2 infection with the subsequent emergence of long COVID symptoms that were still present a year or more after hospital discharge. The final paper is still under review, but you can read the preprint [1]. Multiple published papers have also reported similar associations between acute COVID and long COVID [2],[3] (these were published after the preprint was posted, but they are cited in the latest draft currently under review). More generally, long COVID is not "one in a million" (and it's not 500k individual "one in a million" events). Very very roughly, somewhere around 50% of people with symptomatic COVID report some kind of long COVID symptom, though not all of those last for 12 months [4]. [1]: https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v1 https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v... [2]: https://www.nature.com/articles/s41467-021-27797-1 https://www.nature.com/articles/s41467-021-27797-1 [3]: https://www.sciencedirect.com/science/article/pii/S0092867422000721 https://www.sciencedirect.com/science/article/pii/S009286742... [4]: https://www.science.org/doi/10.1126/science.abm8108 https://www.science.org/doi/10.1126/science.abm8108
- fny 4y ago
  Your cohort targets hospitalized patients. It is no surprise to me they have symptoms which continue a year out. If you read my opening I admit that. Also this population is bound to be riddled with other confounders given the population of individuals who were hospitalized looks quite different than those who were symptomatic in the general population. The 50% rate you talk of for PACS I’ve seen published with a very wide confidence band (10%-60%) with varying symptom definitions. The PACS definition also generally starts at 4 weeks, which again, such a high incidence in that time frame makes sense to me given that the flu and other severe respiratory illnesses similarly linger even out to four months. All of the studies you cite show that PACS is also more coincident with age and preexisting conditions. None specifically discuss symptoms beyond twelve months in patients that were entirely healthy prior to COVID. That is my population of interest. The rest makes sense. Is it really surprisinf that hospitalized patients have PACS a year out? Not to me. Is it surprising a lot of people still have symptoms out 4-6 weeks? I remember swine flu, so no. But a thirty to fifty year old with no preexisting conditions who now has persistent brain fog a year after? That’s very curious, and yet the research does not come anywhere near addressing that cohort.
  - rcthompson 4y ago
    It's true that our cohort is all patients that were hospitalized for COVID-19, but notably, our long COVID questionnaire specifically asked which new symptoms they had after COVID-19 that they didn't already have beforehand. That, plus the direct link to acute patterns of gene expression and antibodies specific to SARS-CoV-2, makes a strong case for a causal link between acute SARS-CoV-2 infection and long COVID a year later. While we don't look at mild non-hospitalized cases in this study, there's no reason to think a causal link wouldn't exist there as well.
cjbgkagh 4y ago
My estimate is ~6% or roughly 1/20 of people who get covid will develop long covid. And it’s my opinion that the vast majority of them have a genetic predisposition to it. Many were already sick before covid but only became aware of it after getting worse from covid. Most people with my genetic condition of hEDS will never know they have it if not for some trigger that makes it much worse. BTW Fibromyalgia has a huge overlap with hEDS… hEDS often has an anxiety disorder component which can make it look like a mental disorder and it kind of is given the interplay of the brain and immune system. But it’s a physical problem than needs real intervention.
- fny 4y ago
  You’re getting to my point. There are a whole host of symptoms that can be triggered for numerous reasons and the interplays are tremendously complex. It demands intervention but if we keep discussing this as COVID-specific symptomology the underlying condition may remain unexplored and untreated. What’s especially frustrating to me is that the definitions for long COVID are so broad and the cohorts used for these studies are so varied that they don’t explain at all the experience of long COVID as discussed in the blog post above or the stories in the comments. Given the seeming irrelevance of the research, I can’t imagine these people will ever find relief unless they break out of a COVID centric mindset and seek other therapies.
  - cjbgkagh 4y ago
    It seems complex but it boils down to the same things; the major discriminating symptom should be Post-exertional malaise (PEM) which is a sign of immune dysfunction. It’s common to ME/CFS and Long Covid. Everything else is just jumping on a bandwagon. The only real difference I’ve seen long covid has to ME/CFS is some additional tissue damage. The problem is that ME/CFS is very difficult to treat and doctors typically have no clue, so what hope do patients have.
- maxerickson 4y ago
  Wouldn't genetic screening make quick work of identifying the people that might have the condition?
thenerdhead 4y ago
I don’t think it’s far fetched to get a virus, test positive for the virus, have lingering symptoms for 14 months and think it’s something related to the virus. When I first started to try to understand what I had, I thought it was burnout, caffeine, mental health, being a second time parent, and even hereditary heart problems. After getting all of that checked out, it wasn’t any of that. Yet I still had transient symptoms in my body that I didn’t have before catching the virus(2021). Weird symptoms like a week of chronic fatigue. Another like I may have a stroke or heart attack any minute. Another where I’d be out of breath for the most mundane things like getting out of the shower. All many months post infection. While I agree with your overall point that it’s very possible people get sick from other factors or even make themselves sick after a traumatic event, since I have experienced this for over a year and documented many of my days through the year, I have no problem believing that long Covid is real. I had been living it. If anything, I think it is more real than we think with current estimates, just that there’s a factor of not wanting to talk about Covid experiences openly due to shame and potential repercussions. That and there’s no known treatment when bringing up the concern without doctors writing you off(since they can’t do much here). One of the many reasons hospitals have a speak up policy although they can’t do much about it today.

by fny 4y ago

rcthompson 4y ago

> How is everyone so sure 12 month+ symptoms are due to COVID-19? Our lab at Mount Sinai has linked gene expression patterns observed during acute SARS-CoV-2 infection with the subsequent emergence of long COVID symptoms that were still present a year or more after hospital discharge. The final paper is still under review, but you can read the preprint [1]. Multiple published papers have also reported similar associations between acute COVID and long COVID [2],[3] (these were published after the preprint was posted, but they are cited in the latest draft currently under review). More generally, long COVID is not "one in a million" (and it's not 500k individual "one in a million" events). Very very roughly, somewhere around 50% of people with symptomatic COVID report some kind of long COVID symptom, though not all of those last for 12 months [4]. [1]: https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v1 https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v... [2]: https://www.nature.com/articles/s41467-021-27797-1 https://www.nature.com/articles/s41467-021-27797-1 [3]: https://www.sciencedirect.com/science/article/pii/S0092867422000721 https://www.sciencedirect.com/science/article/pii/S009286742... [4]: https://www.science.org/doi/10.1126/science.abm8108 https://www.science.org/doi/10.1126/science.abm8108

fny 4y ago
Your cohort targets hospitalized patients. It is no surprise to me they have symptoms which continue a year out. If you read my opening I admit that. Also this population is bound to be riddled with other confounders given the population of individuals who were hospitalized looks quite different than those who were symptomatic in the general population. The 50% rate you talk of for PACS I’ve seen published with a very wide confidence band (10%-60%) with varying symptom definitions. The PACS definition also generally starts at 4 weeks, which again, such a high incidence in that time frame makes sense to me given that the flu and other severe respiratory illnesses similarly linger even out to four months. All of the studies you cite show that PACS is also more coincident with age and preexisting conditions. None specifically discuss symptoms beyond twelve months in patients that were entirely healthy prior to COVID. That is my population of interest. The rest makes sense. Is it really surprisinf that hospitalized patients have PACS a year out? Not to me. Is it surprising a lot of people still have symptoms out 4-6 weeks? I remember swine flu, so no. But a thirty to fifty year old with no preexisting conditions who now has persistent brain fog a year after? That’s very curious, and yet the research does not come anywhere near addressing that cohort.
- rcthompson 4y ago
  It's true that our cohort is all patients that were hospitalized for COVID-19, but notably, our long COVID questionnaire specifically asked which new symptoms they had after COVID-19 that they didn't already have beforehand. That, plus the direct link to acute patterns of gene expression and antibodies specific to SARS-CoV-2, makes a strong case for a causal link between acute SARS-CoV-2 infection and long COVID a year later. While we don't look at mild non-hospitalized cases in this study, there's no reason to think a causal link wouldn't exist there as well.

cjbgkagh 4y ago

My estimate is ~6% or roughly 1/20 of people who get covid will develop long covid. And it’s my opinion that the vast majority of them have a genetic predisposition to it. Many were already sick before covid but only became aware of it after getting worse from covid. Most people with my genetic condition of hEDS will never know they have it if not for some trigger that makes it much worse. BTW Fibromyalgia has a huge overlap with hEDS… hEDS often has an anxiety disorder component which can make it look like a mental disorder and it kind of is given the interplay of the brain and immune system. But it’s a physical problem than needs real intervention.

fny 4y ago
You’re getting to my point. There are a whole host of symptoms that can be triggered for numerous reasons and the interplays are tremendously complex. It demands intervention but if we keep discussing this as COVID-specific symptomology the underlying condition may remain unexplored and untreated. What’s especially frustrating to me is that the definitions for long COVID are so broad and the cohorts used for these studies are so varied that they don’t explain at all the experience of long COVID as discussed in the blog post above or the stories in the comments. Given the seeming irrelevance of the research, I can’t imagine these people will ever find relief unless they break out of a COVID centric mindset and seek other therapies.
- cjbgkagh 4y ago
  It seems complex but it boils down to the same things; the major discriminating symptom should be Post-exertional malaise (PEM) which is a sign of immune dysfunction. It’s common to ME/CFS and Long Covid. Everything else is just jumping on a bandwagon. The only real difference I’ve seen long covid has to ME/CFS is some additional tissue damage. The problem is that ME/CFS is very difficult to treat and doctors typically have no clue, so what hope do patients have.
maxerickson 4y ago
Wouldn't genetic screening make quick work of identifying the people that might have the condition?

thenerdhead 4y ago

I don’t think it’s far fetched to get a virus, test positive for the virus, have lingering symptoms for 14 months and think it’s something related to the virus. When I first started to try to understand what I had, I thought it was burnout, caffeine, mental health, being a second time parent, and even hereditary heart problems. After getting all of that checked out, it wasn’t any of that. Yet I still had transient symptoms in my body that I didn’t have before catching the virus(2021). Weird symptoms like a week of chronic fatigue. Another like I may have a stroke or heart attack any minute. Another where I’d be out of breath for the most mundane things like getting out of the shower. All many months post infection. While I agree with your overall point that it’s very possible people get sick from other factors or even make themselves sick after a traumatic event, since I have experienced this for over a year and documented many of my days through the year, I have no problem believing that long Covid is real. I had been living it. If anything, I think it is more real than we think with current estimates, just that there’s a factor of not wanting to talk about Covid experiences openly due to shame and potential repercussions. That and there’s no known treatment when bringing up the concern without doctors writing you off(since they can’t do much here). One of the many reasons hospitals have a speak up policy although they can’t do much about it today.