5 ms·

I don't really get how people can be so quick to dismiss long covid as made up. Is it too much to just admit that you don't have enough evidence to decide wheth

I don't really get how people can be so quick to dismiss long covid as made up. Is it too much to just admit that you don't have enough evidence to decide whether it's real instead of trying to write claimants off as grifters or mentally ill? Further, it's odd that some people aren't willing to even entertain the possibility that it could be real, given that a number of examples of post-viral syndromes have been observed in other viruses. E.g. post-Ebola virus syndrome [1] and Epstein-Barr's role in the development of multiple sclerosis [2]. At the very least, this warrants taking claims of long COVID seriously, does it not? [1] https://en.wikipedia.org/wiki/Post-Ebola_virus_syndrome https://en.wikipedia.org/wiki/Post-Ebola_virus_syndrome [2] https://med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis.html https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...

pengaru 4y ago
[flagged]
- hayst4ck 4y ago
  You are making a claim, probably similar to "I scraped my knee badly and it was fine, so how can someone scrape their knee in a similar way and be in agony?" You are making assumptions that pain is objective, not subjective. A knee physically scraped in the same way will have the same levels of pain. I don't see any reason to believe that. I could easily see the same injury on two different people resulting in different levels of pain. I could also see a kid who's parents pushed them off a bike in an act of abuse resulting in a knee scrape re-experiencing the emotional trauma of the abuse through the physical pain of the knee. I could also see an injury in the same spot over time turn into something debilitating. I don't deny that there are people who take advantages of bad sets of incentives, but there are also people who aren't taken seriously because people look at the incentives involved and say they must be faking it. I don't think it's just to punish the innocent along with the guilty.
  - pengaru 4y ago
    I'm making no such claim. I'm saying because there's a non-zero percentage of the population that has learned to milk playing the victim, the rest of the population tends to look at ambiguous self-reported ailments like long covid with suspicion. It's not for me to say if long covid is real or not, I'm just noting the social problem with this situation and why many people are so dismissive.
nyolfen 4y ago
there are definitely people with symptoms that could be described as long covid; there are many others who are pathological hypochondriacs that latch onto whatever is floating around the memetic ecology that explains the physical manifestations of their distress and anxiety
- ljw1001 4y ago
  How many? So many. And that’s not just my opinion; it’s my strongly held opinion
- 6177c40f 4y ago
  It may be that that ultimately proves to be the most likely explanation, but I strongly disagree with the level of certainty you're attaching to that claim in this case.
  - pseudo0 4y ago
    The correlation with anxiety disorders makes me highly skeptical of long COVID claims: > “We were surprised by how strongly psychological distress before a COVID-19 infection was associated with an increased risk of long COVID,” said Siwen Wang, a researcher in the Department of Nutrition at Harvard Chan School who led the study. “Distress was more strongly associated with developing long COVID than physical health risk factors such as obesity, asthma, and hypertension.” https://news.harvard.edu/gazette/story/2022/09/depression-anxiety-may-escalate-chances-of-long-covid-says-study/ https://news.harvard.edu/gazette/story/2022/09/depression-an...
    - randm_sequence 4y ago
      It is well known that psychological distress can weaken the immune system making individuals less able to clear a novel virus.
      - nyolfen 4y ago
        surely this should be reflected in mortality rates, then, right? and yet...
kerpotgh 4y ago
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fundad 4y ago
I think people are very attached to the thought of everything being ok.
acdha 4y ago
[flagged]
- Slava_Propanei 4y ago
  [dead]
contravariant 4y ago
I do think some people are quick to dismiss it. Though I must admit that I'm also not quite sure what is happening here. The problem seems to be very much real, but the link to Covid is tenuous. The only symptom with a plausible causal link is the shortness of breath, and most symptoms of long-covid are the kind of psychosomatic symptoms that, while real, could be a symptom of something else and may have been exacerbated by a heavy illness, rather than caused by it. The other problem is the lack of people not infected by Covid. Pretty much everyone close to a burn-out would experience increasing fatigue, weakness, depression with a very sharp increase at the point where they may have gotten hit by Covid. A bit like how spring always seems to arrive suddenly, simply because an average increase temperature happened to coincide with a sudden change in weather. The lack of any common treatment or known causal link makes it very tricky to get a grasp of the situation. So far the only thing that I think is well established is that it is a problem, but I'd really like to know more about how it came about and what can be done about it.
- nicoburns 4y ago
  > The only symptom with a plausible causal link is the shortness of breath That seems quite presumptious given that there is clear evidence that covid attacks organs other than the lungs (such as the heart and kidneys). Chronic fatigue is also well-established as a post-viral syndrome following other viral infections, and even though we don't understand what causes it.
timr 4y ago
> Is it too much to just admit that you don't have enough evidence to decide whether it's real instead of trying to write claimants off as grifters or mentally ill? The fundamental problem is that essentially all of the "science" around Long Covid is abysmal -- phone surveys and uncontrolled, retrospective analyses of medical billing codes; many don't even bother to check if the respondent had Covid -- and the few studies that actually do achieve any level of rigor have read out negative results. For example, the NIH ran a controlled, longitudinal study where they ran a battery of tests on 189 people confirmed to have Covid, and 120 controls...and found nothing objective that would define a disease state. This tweet thread does a great job of summarizing the results, and where the good science on Long Covid mostly stands at the current time: https://twitter.com/awgaffney/status/1528876982754476032 https://twitter.com/awgaffney/status/1528876982754476032 We don't generally accept someone's self-reported illness without objective verification. It's too easy to do harm, and hypochondria is a real thing. Does that mean that Long Covid doesn't exist? No, of course not (among other things, post-hospitalization syndrome is a real thing! People who spend time in the hospital generally take time to get better!)...but it also doesn't mean that we should accept silly headlines and hyperbolic claims at face value.
- leereeves 4y ago
  Even the definition of the disease is abysmal: "continuation or development of new symptoms three months after the initial SARS-CoV-2 infection", a post hoc ergo propter hoc diagnosis. And "the main symptoms are a shortness of breath, fatigue and weakness, depression, anxiety, and symptoms associated with memory difficulties." I have several of those symptoms and I never even had Covid. In my case, I blame aging and inactivity, but if I had caught Covid, I could probably get a diagnosis of Long-Covid. Study any population of people "over 60 or with co-morbidities" in any three month period and you'll find people who develop those symptoms at that time. So as you said, it's really important to have properly controlled studies to isolate the effect of Covid.
  - randm_sequence 4y ago
    LongCOVID is a persistent viral infection. Most RNA viruses that afflict humans are persistent (like Hepatitis). Right now, zero dollars are being invested in developing the diagnostics required to detect the virus. Thus, an irrefutable test is not available. Note that SARS and MERS patients also longhauled. If you look at other species, a coronavirus (FIPV) can infect cats in a chronic fashion. In fact, Feline Infectious Peritonitis Virus is treated with the *exact* same antivirals as COVID. It is incredibly difficult to detect FIPV in cats due to irregular shedding by the virus. There are now dozens of papers that have detected SARS-CoV2 viral RNA and viral proteins in longhaulers up to 12+ months after the initial infection. HIV initially causes a flu like illness in over half of individuals who contract the virus. These symptoms clear. The virus is still in the body and, untreated, results in AIDS and ultimately death.
swatcoder 4y ago
Look: for every problem in the world (and in your city, and in your neighborhood, and in your family), there are people who just don’t want to hear it. They’re generally not the same people from problem to problem, but there’s always a bunch of them. They have their own problems, their own hangups, their own way of seeing the world, etc. They have a thousand totally personal and idiosyncratic reasons. And the easier it is to dismiss the problem, the more staunchly they’ll do so. It just so happens that autonomic body issues and subjectively assessed complaints are very easy to dismiss because they’re really nebulous and sometimes genuinely psychogenic or iatrogenic. So the people who just don’t want to deal with this problem right now have a really easy time taking a pass on it. That’s the way it’s gone for hundreds of years and will go for hundreds more. Getting yourself caught up in frustration or confusion over those people isn’t going to do you a lot of good. If you care about this problem, help people who are suffering from it or work with other people who care about with you. Don’t worry about the people who don’t. They’re not going anywhere.
Jeema101 4y ago
>At the very least, this warrants taking claims of long COVID seriously, does it not? Well clearly those Ebola survivors are also grifters who are 'just depressed'. It's grifters and depression all the way down! /s
corbulo 4y ago
The onus is on the people making the claim to prove its real. So far theyve collected information on it so negligently it should really just be called data fraud. Pretty obvious whats happening when thats the case.
- randm_sequence 4y ago
  I recommend that you read up on the history of the last large scale viral infection that greatly impacted society - HIV - and how slowly the medical community accepted the illness and the gaslighting that happened to patients.
  - corbulo 4y ago
    Long covid can be measured directly or indirectly in a blood sample? Please provide literature on that.
lazide 4y ago
The simple answer? It’s too scary and nebulous for most people to handle - so they attack and deny it.

pengaru 4y ago

[flagged]

hayst4ck 4y ago
You are making a claim, probably similar to "I scraped my knee badly and it was fine, so how can someone scrape their knee in a similar way and be in agony?" You are making assumptions that pain is objective, not subjective. A knee physically scraped in the same way will have the same levels of pain. I don't see any reason to believe that. I could easily see the same injury on two different people resulting in different levels of pain. I could also see a kid who's parents pushed them off a bike in an act of abuse resulting in a knee scrape re-experiencing the emotional trauma of the abuse through the physical pain of the knee. I could also see an injury in the same spot over time turn into something debilitating. I don't deny that there are people who take advantages of bad sets of incentives, but there are also people who aren't taken seriously because people look at the incentives involved and say they must be faking it. I don't think it's just to punish the innocent along with the guilty.
- pengaru 4y ago
  I'm making no such claim. I'm saying because there's a non-zero percentage of the population that has learned to milk playing the victim, the rest of the population tends to look at ambiguous self-reported ailments like long covid with suspicion. It's not for me to say if long covid is real or not, I'm just noting the social problem with this situation and why many people are so dismissive.

nyolfen 4y ago

there are definitely people with symptoms that could be described as long covid; there are many others who are pathological hypochondriacs that latch onto whatever is floating around the memetic ecology that explains the physical manifestations of their distress and anxiety

ljw1001 4y ago
How many? So many. And that’s not just my opinion; it’s my strongly held opinion
6177c40f 4y ago
It may be that that ultimately proves to be the most likely explanation, but I strongly disagree with the level of certainty you're attaching to that claim in this case.
- pseudo0 4y ago
  The correlation with anxiety disorders makes me highly skeptical of long COVID claims: > “We were surprised by how strongly psychological distress before a COVID-19 infection was associated with an increased risk of long COVID,” said Siwen Wang, a researcher in the Department of Nutrition at Harvard Chan School who led the study. “Distress was more strongly associated with developing long COVID than physical health risk factors such as obesity, asthma, and hypertension.” https://news.harvard.edu/gazette/story/2022/09/depression-anxiety-may-escalate-chances-of-long-covid-says-study/ https://news.harvard.edu/gazette/story/2022/09/depression-an...
  - randm_sequence 4y ago
    It is well known that psychological distress can weaken the immune system making individuals less able to clear a novel virus.
    - nyolfen 4y ago
      surely this should be reflected in mortality rates, then, right? and yet...

kerpotgh 4y ago

[dead]

fundad 4y ago

I think people are very attached to the thought of everything being ok.

acdha 4y ago

[flagged]

Slava_Propanei 4y ago
[dead]

contravariant 4y ago

I do think some people are quick to dismiss it. Though I must admit that I'm also not quite sure what is happening here. The problem seems to be very much real, but the link to Covid is tenuous. The only symptom with a plausible causal link is the shortness of breath, and most symptoms of long-covid are the kind of psychosomatic symptoms that, while real, could be a symptom of something else and may have been exacerbated by a heavy illness, rather than caused by it. The other problem is the lack of people not infected by Covid. Pretty much everyone close to a burn-out would experience increasing fatigue, weakness, depression with a very sharp increase at the point where they may have gotten hit by Covid. A bit like how spring always seems to arrive suddenly, simply because an average increase temperature happened to coincide with a sudden change in weather. The lack of any common treatment or known causal link makes it very tricky to get a grasp of the situation. So far the only thing that I think is well established is that it is a problem, but I'd really like to know more about how it came about and what can be done about it.

nicoburns 4y ago
> The only symptom with a plausible causal link is the shortness of breath That seems quite presumptious given that there is clear evidence that covid attacks organs other than the lungs (such as the heart and kidneys). Chronic fatigue is also well-established as a post-viral syndrome following other viral infections, and even though we don't understand what causes it.

timr 4y ago

> Is it too much to just admit that you don't have enough evidence to decide whether it's real instead of trying to write claimants off as grifters or mentally ill? The fundamental problem is that essentially all of the "science" around Long Covid is abysmal -- phone surveys and uncontrolled, retrospective analyses of medical billing codes; many don't even bother to check if the respondent had Covid -- and the few studies that actually do achieve any level of rigor have read out negative results. For example, the NIH ran a controlled, longitudinal study where they ran a battery of tests on 189 people confirmed to have Covid, and 120 controls...and found nothing objective that would define a disease state. This tweet thread does a great job of summarizing the results, and where the good science on Long Covid mostly stands at the current time: https://twitter.com/awgaffney/status/1528876982754476032 https://twitter.com/awgaffney/status/1528876982754476032 We don't generally accept someone's self-reported illness without objective verification. It's too easy to do harm, and hypochondria is a real thing. Does that mean that Long Covid doesn't exist? No, of course not (among other things, post-hospitalization syndrome is a real thing! People who spend time in the hospital generally take time to get better!)...but it also doesn't mean that we should accept silly headlines and hyperbolic claims at face value.

leereeves 4y ago
Even the definition of the disease is abysmal: "continuation or development of new symptoms three months after the initial SARS-CoV-2 infection", a post hoc ergo propter hoc diagnosis. And "the main symptoms are a shortness of breath, fatigue and weakness, depression, anxiety, and symptoms associated with memory difficulties." I have several of those symptoms and I never even had Covid. In my case, I blame aging and inactivity, but if I had caught Covid, I could probably get a diagnosis of Long-Covid. Study any population of people "over 60 or with co-morbidities" in any three month period and you'll find people who develop those symptoms at that time. So as you said, it's really important to have properly controlled studies to isolate the effect of Covid.
- randm_sequence 4y ago
  LongCOVID is a persistent viral infection. Most RNA viruses that afflict humans are persistent (like Hepatitis). Right now, zero dollars are being invested in developing the diagnostics required to detect the virus. Thus, an irrefutable test is not available. Note that SARS and MERS patients also longhauled. If you look at other species, a coronavirus (FIPV) can infect cats in a chronic fashion. In fact, Feline Infectious Peritonitis Virus is treated with the *exact* same antivirals as COVID. It is incredibly difficult to detect FIPV in cats due to irregular shedding by the virus. There are now dozens of papers that have detected SARS-CoV2 viral RNA and viral proteins in longhaulers up to 12+ months after the initial infection. HIV initially causes a flu like illness in over half of individuals who contract the virus. These symptoms clear. The virus is still in the body and, untreated, results in AIDS and ultimately death.

swatcoder 4y ago

Look: for every problem in the world (and in your city, and in your neighborhood, and in your family), there are people who just don’t want to hear it. They’re generally not the same people from problem to problem, but there’s always a bunch of them. They have their own problems, their own hangups, their own way of seeing the world, etc. They have a thousand totally personal and idiosyncratic reasons. And the easier it is to dismiss the problem, the more staunchly they’ll do so. It just so happens that autonomic body issues and subjectively assessed complaints are very easy to dismiss because they’re really nebulous and sometimes genuinely psychogenic or iatrogenic. So the people who just don’t want to deal with this problem right now have a really easy time taking a pass on it. That’s the way it’s gone for hundreds of years and will go for hundreds more. Getting yourself caught up in frustration or confusion over those people isn’t going to do you a lot of good. If you care about this problem, help people who are suffering from it or work with other people who care about with you. Don’t worry about the people who don’t. They’re not going anywhere.

Jeema101 4y ago

>At the very least, this warrants taking claims of long COVID seriously, does it not? Well clearly those Ebola survivors are also grifters who are 'just depressed'. It's grifters and depression all the way down! /s

corbulo 4y ago

The onus is on the people making the claim to prove its real. So far theyve collected information on it so negligently it should really just be called data fraud. Pretty obvious whats happening when thats the case.

randm_sequence 4y ago
I recommend that you read up on the history of the last large scale viral infection that greatly impacted society - HIV - and how slowly the medical community accepted the illness and the gaslighting that happened to patients.
- corbulo 4y ago
  Long covid can be measured directly or indirectly in a blood sample? Please provide literature on that.

lazide 4y ago

The simple answer? It’s too scary and nebulous for most people to handle - so they attack and deny it.