4 ms·

Why is it such an issue that people deny it? Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes"

by hirako2000 3y ago

Why is it such an issue that people deny it? Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes" I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.

AnimalMuppet 3y ago
It's an issue when doctors deny it. For many years, for many doctors, that was the case with CFS.
- whimsicalism 3y ago
  There is still no identified viral mechanism for CFS. So yes, you will continue to find many doctors that deny that there is convincing evidence for viral causes of CFS because that is the reality of the current situation.
  - AnimalMuppet 3y ago
    Fair. I was talking about doctors denying the existence of CFS, but that wasn't the topic, was it?
  - pixl97 3y ago
    If I had to make guesses, my take is a viral+immune system interaction. You get the virus which causes your own immune system to respond. In that response we get a 'partial match' to something inside of our own system. This leads to a low level inflammatory attack against your own system. In type 1 diabetics there is some evidence of a post viral auto-immune cause in some cases. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2570378/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2570378/
    - bugglebeetle 3y ago
      And COVID infections increase you risk of developing type 2 diabetes: https://www.cedars-sinai.org/newsroom/verified-covid-19-infection-increases-diabetes-risk/ https://www.cedars-sinai.org/newsroom/verified-covid-19-infe...
  - jacquesm 3y ago
    But: absence of evidence is not necessarily evidence of absence. The fact that we still haven't found convincing evidence (with the caveat that 'millions of people complain about certain symptoms' in my book counts as overwhelming evidence) doesn't mean that such a mechanism doesn't exist. It may merely mean that we are looking in the wrong places, may not be looking in the right way and in general still have a poor understanding of how our bodies really work. GBS for instance: https://www.who.int/news-room/fact-sheets/detail/guillain-barr%C3%A9-syndrome https://www.who.int/news-room/fact-sheets/detail/guillain-ba... Is linked to post viral or post bacterial infections, and even though here too there is a lack of complete understanding at least the symptoms are so clear (up to complete paralysis) that denying it seems pointless. It's also super rare, so there is no incentive to deny it. But if COVID ends up putting a sizeable percentage of the workforce out of action that may well have serious implications for how we deal with chronic disease and post viral infections. Incidentally: this is one of the possible futures that various experts warned about during the early days of the pandemic, that it would be a decade or more before we would fully understand the impact and that by assuming the post infection consequences would be mild that we may have made a grave mistake. Fortunately some of the more outrageous possibilities have so far not surfaced, this is one that we can deal with.
  - tremon 3y ago
    Doctors are not medical forensics. It shouldn't matter that the mechanism behind CFS isn't known, there's ample evidence that the condition is real. So I reject that casual dismissal. However, there is no known way to treat CFS. That problem is a much more valid excuse for a doctor to do nothing. But a doctor that refuses to acknowledge a patient's troubles because they don't know how to treat it is a bad doctor.
- hirako2000 3y ago
  Then agreed it is a problem. Some investigation revealed though that is has become more difficult for GPs to ignore the pressure put on them by insurers to send patients back to work.
fnordpiglet 3y ago
* fatigue is something everyone feels sometimes and the answer is to push through it for most people * it’s impossible to observe fatigue objectively, it just appears people are lazy or low energy * there’s no known (or at least there wasn’t last time I researched it) bio markers for CFS * there’s no known evidence of viruses causes CFS, just speculation Etc Things have changed a lot over the last 30 years. I think most people including doctors accept CFS is real whereas that wasn’t the case in the past. The case for the cause of CFS is still very much open, and I think it’s probably naive to say CFS is caused by viral infections. It’s probably the case that some CFS is caused by viral infections, but again, it’s hard to differentiate, it’s hard to prove, and even if you did, so what? CFS probably also has autoimmune causes, which themselves are diffuse in their root causes and mechanisms, and even psychosomatic roots in burnout and other extreme stress syndrome. Finally, when the causes are psychosomatic, that isn’t code for “fake,” it is literally a real issue it’s just not caused by an extrinsic agent. The health impact of extreme prolonged stress is not a joke, and it’s not the persons “fault.” There seems to be a real need for people to pin their CFS and other health issues on some external factor and not the abuse they’ve (or others have) subjected their psychology and by proxy their body to.
- whimsicalism 3y ago
  > I think most people including doctors accept CFS is real whereas that wasn’t the case in the past. I think most doctors accept that CFS is real, but I also think most doctors would not call a somatic illness fake. See for instance these researchers [0] who are research somatic causes yet all agree there is a physical/hereditary component. Anxiety disorders also have a hereditary component and they aren't fake. [0]: https://theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis https://theguardian.com/society/2011/aug/21/chronic-fatigue-...
thenerdhead 3y ago
Because of long covid and the millions suffering with it, we are revealing many new findings of a category that has largely been ignored for centuries. Darwin for example was thought to had CFS through his health journals, but nobody knew or cared about it. When those new findings challenge our current understanding, we get smarter as a species and work to alleviate the suffering by investing more money and time into these matters. Points aside, your third point is largely concerning.
RoyTyrell 3y ago
My girlfriend's sister suffers from Long Covid for going on 2yrs now. Some of the problems she had early on is that most doctors wrote her off as either lying or anxiety. More than one ER doc said there's no way that Covid could ever cause lasting symptoms other than lung damage, which she didn't have, so it's likely just anxiety. There was one DO she saw, during an admit for tachycardia, who said that he believed that she has a post-viral syndrome and knew of others with other post-Covid issues. The problem would be trying to convince his colleagues to believe it would be an uphill battle, so he hoped it was temporary for her. I know things have changed now but some doctors can be extremely arrogant and dismissive of patients (female patients more than male).
- irrational 3y ago
  > but trying to get his colleagues to believe it would be an uphill battle You have to go through a lot of education to become a doctor, so people naturally expect doctor's to be wise, but the truth is they are just good a memorizing things. They aren't necessarily smarter than any other person and have just as many blindspots. * Source: My dad and uncle are doctors. My brother in law is a doctor. I have a friend who is a doctor. And I've known a lot of other doctors through them.
  - talldatethrow 3y ago
    I dated a med school student for all of medschool and some rotations. Thus I have countless doctor friends now from those years. Everytime I bring up the reality of what most doctors are like, I get downvoted on HN for some reason. The doctor I dated for years never drank water. She loved diet coke. She ate mcdonalds constantly but avoided the bun. She was skinny though. I had to teach her how to pump gas because her dad did it for her until she was 22. She loved cocaine and moly. Currently cycles Adderall and Ritalin (or something very similar) so she doesnt get too used to one or the other. I could list 20 other 'wtf?' type of things about her. Most others are similarly weird, careless, unhealthy, confused and logicless.
    - 221qqwe 3y ago
xeromal 3y ago
I think it's simply because no normal human wants to know that they're permanently damaged. It's a real tough pill to swallow. You have to be very comfortable with your own mortality.
freilanzer 3y ago
Because I've been running from doctor to doctor for years without results - because they won't test for anything other than the regular stuff, like blood tests, heart issues, etc. My boss doesn't believe me since CFS or burnout couldn't possibly exist, you just need to focus on your work more. Everytime I say I can't go out since I'm too tired I get made fun of or have eyes rolled at me. It's like denying someone has a broken arm and gets ridiculed for not wanting to play tennis.
- thenerdhead 3y ago
  You should read Howard Bloom's advice on CFS. He basically says you have to become your own doctor and use medical professionals as your council. https://forums.phoenixrising.me/attachments/howard-bloom-cfs-pamphlet-pdf.29064/ https://forums.phoenixrising.me/attachments/howard-bloom-cfs...

AnimalMuppet 3y ago

It's an issue when doctors deny it. For many years, for many doctors, that was the case with CFS.

whimsicalism 3y ago
There is still no identified viral mechanism for CFS. So yes, you will continue to find many doctors that deny that there is convincing evidence for viral causes of CFS because that is the reality of the current situation.
- AnimalMuppet 3y ago
  Fair. I was talking about doctors denying the existence of CFS, but that wasn't the topic, was it?
- pixl97 3y ago
  If I had to make guesses, my take is a viral+immune system interaction. You get the virus which causes your own immune system to respond. In that response we get a 'partial match' to something inside of our own system. This leads to a low level inflammatory attack against your own system. In type 1 diabetics there is some evidence of a post viral auto-immune cause in some cases. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2570378/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2570378/
  - bugglebeetle 3y ago
    And COVID infections increase you risk of developing type 2 diabetes: https://www.cedars-sinai.org/newsroom/verified-covid-19-infection-increases-diabetes-risk/ https://www.cedars-sinai.org/newsroom/verified-covid-19-infe...
- jacquesm 3y ago
  But: absence of evidence is not necessarily evidence of absence. The fact that we still haven't found convincing evidence (with the caveat that 'millions of people complain about certain symptoms' in my book counts as overwhelming evidence) doesn't mean that such a mechanism doesn't exist. It may merely mean that we are looking in the wrong places, may not be looking in the right way and in general still have a poor understanding of how our bodies really work. GBS for instance: https://www.who.int/news-room/fact-sheets/detail/guillain-barr%C3%A9-syndrome https://www.who.int/news-room/fact-sheets/detail/guillain-ba... Is linked to post viral or post bacterial infections, and even though here too there is a lack of complete understanding at least the symptoms are so clear (up to complete paralysis) that denying it seems pointless. It's also super rare, so there is no incentive to deny it. But if COVID ends up putting a sizeable percentage of the workforce out of action that may well have serious implications for how we deal with chronic disease and post viral infections. Incidentally: this is one of the possible futures that various experts warned about during the early days of the pandemic, that it would be a decade or more before we would fully understand the impact and that by assuming the post infection consequences would be mild that we may have made a grave mistake. Fortunately some of the more outrageous possibilities have so far not surfaced, this is one that we can deal with.
- tremon 3y ago
  Doctors are not medical forensics. It shouldn't matter that the mechanism behind CFS isn't known, there's ample evidence that the condition is real. So I reject that casual dismissal. However, there is no known way to treat CFS. That problem is a much more valid excuse for a doctor to do nothing. But a doctor that refuses to acknowledge a patient's troubles because they don't know how to treat it is a bad doctor.
hirako2000 3y ago
Then agreed it is a problem. Some investigation revealed though that is has become more difficult for GPs to ignore the pressure put on them by insurers to send patients back to work.

fnordpiglet 3y ago

* fatigue is something everyone feels sometimes and the answer is to push through it for most people * it’s impossible to observe fatigue objectively, it just appears people are lazy or low energy * there’s no known (or at least there wasn’t last time I researched it) bio markers for CFS * there’s no known evidence of viruses causes CFS, just speculation Etc Things have changed a lot over the last 30 years. I think most people including doctors accept CFS is real whereas that wasn’t the case in the past. The case for the cause of CFS is still very much open, and I think it’s probably naive to say CFS is caused by viral infections. It’s probably the case that some CFS is caused by viral infections, but again, it’s hard to differentiate, it’s hard to prove, and even if you did, so what? CFS probably also has autoimmune causes, which themselves are diffuse in their root causes and mechanisms, and even psychosomatic roots in burnout and other extreme stress syndrome. Finally, when the causes are psychosomatic, that isn’t code for “fake,” it is literally a real issue it’s just not caused by an extrinsic agent. The health impact of extreme prolonged stress is not a joke, and it’s not the persons “fault.” There seems to be a real need for people to pin their CFS and other health issues on some external factor and not the abuse they’ve (or others have) subjected their psychology and by proxy their body to.

whimsicalism 3y ago
> I think most people including doctors accept CFS is real whereas that wasn’t the case in the past. I think most doctors accept that CFS is real, but I also think most doctors would not call a somatic illness fake. See for instance these researchers [0] who are research somatic causes yet all agree there is a physical/hereditary component. Anxiety disorders also have a hereditary component and they aren't fake. [0]: https://theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis https://theguardian.com/society/2011/aug/21/chronic-fatigue-...

thenerdhead 3y ago

Because of long covid and the millions suffering with it, we are revealing many new findings of a category that has largely been ignored for centuries. Darwin for example was thought to had CFS through his health journals, but nobody knew or cared about it. When those new findings challenge our current understanding, we get smarter as a species and work to alleviate the suffering by investing more money and time into these matters. Points aside, your third point is largely concerning.

RoyTyrell 3y ago

My girlfriend's sister suffers from Long Covid for going on 2yrs now. Some of the problems she had early on is that most doctors wrote her off as either lying or anxiety. More than one ER doc said there's no way that Covid could ever cause lasting symptoms other than lung damage, which she didn't have, so it's likely just anxiety. There was one DO she saw, during an admit for tachycardia, who said that he believed that she has a post-viral syndrome and knew of others with other post-Covid issues. The problem would be trying to convince his colleagues to believe it would be an uphill battle, so he hoped it was temporary for her. I know things have changed now but some doctors can be extremely arrogant and dismissive of patients (female patients more than male).

irrational 3y ago
> but trying to get his colleagues to believe it would be an uphill battle You have to go through a lot of education to become a doctor, so people naturally expect doctor's to be wise, but the truth is they are just good a memorizing things. They aren't necessarily smarter than any other person and have just as many blindspots. * Source: My dad and uncle are doctors. My brother in law is a doctor. I have a friend who is a doctor. And I've known a lot of other doctors through them.
- talldatethrow 3y ago
  I dated a med school student for all of medschool and some rotations. Thus I have countless doctor friends now from those years. Everytime I bring up the reality of what most doctors are like, I get downvoted on HN for some reason. The doctor I dated for years never drank water. She loved diet coke. She ate mcdonalds constantly but avoided the bun. She was skinny though. I had to teach her how to pump gas because her dad did it for her until she was 22. She loved cocaine and moly. Currently cycles Adderall and Ritalin (or something very similar) so she doesnt get too used to one or the other. I could list 20 other 'wtf?' type of things about her. Most others are similarly weird, careless, unhealthy, confused and logicless.
  - 221qqwe 3y ago

xeromal 3y ago

I think it's simply because no normal human wants to know that they're permanently damaged. It's a real tough pill to swallow. You have to be very comfortable with your own mortality.

freilanzer 3y ago

Because I've been running from doctor to doctor for years without results - because they won't test for anything other than the regular stuff, like blood tests, heart issues, etc. My boss doesn't believe me since CFS or burnout couldn't possibly exist, you just need to focus on your work more. Everytime I say I can't go out since I'm too tired I get made fun of or have eyes rolled at me. It's like denying someone has a broken arm and gets ridiculed for not wanting to play tennis.

thenerdhead 3y ago
You should read Howard Bloom's advice on CFS. He basically says you have to become your own doctor and use medical professionals as your council. https://forums.phoenixrising.me/attachments/howard-bloom-cfs-pamphlet-pdf.29064/ https://forums.phoenixrising.me/attachments/howard-bloom-cfs...