6 ms·

This is what doctors say whenever they aren't sure what something is, and is incredibly insulting to people who are really dealing with the issue. Its medical

by ep103 4y ago

This is what doctors say whenever they aren't sure what something is, and is incredibly insulting to people who are really dealing with the issue. Its medical dunning-kruger. The fact that prednisone resolves so many of these cases, that there are experimental tests starting to gain traction about diagnosing LC, and there are numerous good theories put forward in the research community explaining the various pathways that explain LC outside of it being "psychosomatic". The issue is that its new, studies are still on-going, and just from a basic infrastructure level western medicine is incredibly ill suited to treat chronic issues.

AnimalMuppet 4y ago
Can you (or anyone) give any data about prednisone here? First I've heard of it.
- ep103 4y ago
  There are a lot of different reasons why someone can have long covid. But a common one is that the person's immune system still appears to be inflamed / hyperactive long after the initial infection is over. Or at least, the immune system is still active enough that it is putting enough of a tax on the body, that the body is unable to restore back to normal levels in the recovery time after fighting off the infection. This is pretty undisputed as a very common occurrence among long covid victims after the infection. There is a lot of debate on whether or not this is sufficient as a metric to identify long covid, because there are lots of reasons why someone could have long covid, this is just a particularly common one. There is even more controversy on why this is happening (the fact that it is happening is not controversial), because the common belief is that once the body fights off the virus, the immune system should naturally calm down again, which, obviously, isn't the case for many patients. There have been some studies that show that LC victims sometimes have sustained enough damage that the immune system is still raised as a result of that damage. There have been some studies that show that some LC victims still actively have the virus in their system, which could be responsible. And that's before you even start wondering about things like other complications, or the degree to which people may be getting reexposed on a regular basis. Etc. Glucocorticoid steroids (of which prednisone is among the most common) suppress your immune system. Specifically, it suppresses cytokines IL-1,6, and 10, and the gamma one (sorry, I'm not a doctor). For a _lot_ of people, this seems to finally calm their immune system down, give the body a breather to restore back to normal, and _many_ patients stay better after the treatment. Many Asthma medications have a similar cytokine effect, and users & doctors colloquially report positives there too. Among the LC community, the supplements that are most touted seem to generally align with having effects on the same systems that are much more effectively targeted by a glucocorticoid steroid. But again, LC can be for many reasons, studies are still inconclusive, and western science is awful at treating chronic conditions particularly when they're complicated by other underlying conditions, so fingers crossed and good luck. That said, prednisone gave me my life back, so I would strongly recommend it if your symptoms line up with any of the raised cytokine / histamine symptoms. I could provide some documentation I've found about that if it helps.
  - AnimalMuppet 4y ago
    That's very informative. Thank you.
- nradov 4y ago
  Prednisone is an anti-inflammatory steroid. It is a pretty effective at relieving pain and other symptoms from a variety of medical conditions, so a lot of patients will feel better regardless of whether they actually have "long Covid" or not. Prednisone also has some pretty severe side effects so chronic use should be avoided. https://medlineplus.gov/druginfo/meds/a601102.html https://medlineplus.gov/druginfo/meds/a601102.html
legitster 4y ago
> prednisone resolves so many of these cases Of course, even if the cause is psychosomatic, you are still experiencing real symptoms - you would of course expect treatments like prednisone to work. Just like you would expect Tylenol to resolve a headache regardless of whether you believe the headache is caused by poor diet and exercise or the retrograde of Mercury. > The issue is that its new, studies are still on-going, and just from a basic infrastructure level western medicine is incredibly ill suited to treat chronic issues. Is there another version of medicine that is better suited to treating chronic issues like headache and fatigue? If anything about them would be superior to ours, it would be their ability to prescribe a placebo.
- deleted 4y ago
  [deleted]
- ep103 4y ago
  I appreciate that you are trying to help, and you are making correct arguments about the semantics of these words, but you clearly are uninformed about this subject and are providing arguments that are going to be misleading about a real medical issue that is currently hurting many people. It is important to know when not to talk.
  - legitster 4y ago
    I spent two years in and out of a hospital as a youth at great expense to myself and my family in an attempt to deal with an issue that ended up being largely psychosomatic. If a single doctor had the courage to be square with me that I didn't have a life-threatening condition and that an endless series of tests and procedures would gain me nothing, I could have had all of that time and money back. In an effort to listen to me, they endlessly strung me along in a process that was more painful than the actual condition. I can guarantee I have more personal experience in this subject than you could begin to imagine, long before Covid was a thing - I do not appreciate being talked down to and I have just as much right to my opinions as you do. But people - chronic disease sufferers included - really, really need to understand that "psychosomatic" doesn't mean you don't have a real medical issue. What it means is you have a real medical condition with a completely different set of treatment options. Often ones that are easy, affordable, and in your control.

by ep103 4y ago

AnimalMuppet 4y ago

Can you (or anyone) give any data about prednisone here? First I've heard of it.

ep103 4y ago
There are a lot of different reasons why someone can have long covid. But a common one is that the person's immune system still appears to be inflamed / hyperactive long after the initial infection is over. Or at least, the immune system is still active enough that it is putting enough of a tax on the body, that the body is unable to restore back to normal levels in the recovery time after fighting off the infection. This is pretty undisputed as a very common occurrence among long covid victims after the infection. There is a lot of debate on whether or not this is sufficient as a metric to identify long covid, because there are lots of reasons why someone could have long covid, this is just a particularly common one. There is even more controversy on why this is happening (the fact that it is happening is not controversial), because the common belief is that once the body fights off the virus, the immune system should naturally calm down again, which, obviously, isn't the case for many patients. There have been some studies that show that LC victims sometimes have sustained enough damage that the immune system is still raised as a result of that damage. There have been some studies that show that some LC victims still actively have the virus in their system, which could be responsible. And that's before you even start wondering about things like other complications, or the degree to which people may be getting reexposed on a regular basis. Etc. Glucocorticoid steroids (of which prednisone is among the most common) suppress your immune system. Specifically, it suppresses cytokines IL-1,6, and 10, and the gamma one (sorry, I'm not a doctor). For a _lot_ of people, this seems to finally calm their immune system down, give the body a breather to restore back to normal, and _many_ patients stay better after the treatment. Many Asthma medications have a similar cytokine effect, and users & doctors colloquially report positives there too. Among the LC community, the supplements that are most touted seem to generally align with having effects on the same systems that are much more effectively targeted by a glucocorticoid steroid. But again, LC can be for many reasons, studies are still inconclusive, and western science is awful at treating chronic conditions particularly when they're complicated by other underlying conditions, so fingers crossed and good luck. That said, prednisone gave me my life back, so I would strongly recommend it if your symptoms line up with any of the raised cytokine / histamine symptoms. I could provide some documentation I've found about that if it helps.
- AnimalMuppet 4y ago
  That's very informative. Thank you.
nradov 4y ago
Prednisone is an anti-inflammatory steroid. It is a pretty effective at relieving pain and other symptoms from a variety of medical conditions, so a lot of patients will feel better regardless of whether they actually have "long Covid" or not. Prednisone also has some pretty severe side effects so chronic use should be avoided. https://medlineplus.gov/druginfo/meds/a601102.html https://medlineplus.gov/druginfo/meds/a601102.html

legitster 4y ago

> prednisone resolves so many of these cases Of course, even if the cause is psychosomatic, you are still experiencing real symptoms - you would of course expect treatments like prednisone to work. Just like you would expect Tylenol to resolve a headache regardless of whether you believe the headache is caused by poor diet and exercise or the retrograde of Mercury. > The issue is that its new, studies are still on-going, and just from a basic infrastructure level western medicine is incredibly ill suited to treat chronic issues. Is there another version of medicine that is better suited to treating chronic issues like headache and fatigue? If anything about them would be superior to ours, it would be their ability to prescribe a placebo.

deleted 4y ago
[deleted]
ep103 4y ago
I appreciate that you are trying to help, and you are making correct arguments about the semantics of these words, but you clearly are uninformed about this subject and are providing arguments that are going to be misleading about a real medical issue that is currently hurting many people. It is important to know when not to talk.
- legitster 4y ago
  I spent two years in and out of a hospital as a youth at great expense to myself and my family in an attempt to deal with an issue that ended up being largely psychosomatic. If a single doctor had the courage to be square with me that I didn't have a life-threatening condition and that an endless series of tests and procedures would gain me nothing, I could have had all of that time and money back. In an effort to listen to me, they endlessly strung me along in a process that was more painful than the actual condition. I can guarantee I have more personal experience in this subject than you could begin to imagine, long before Covid was a thing - I do not appreciate being talked down to and I have just as much right to my opinions as you do. But people - chronic disease sufferers included - really, really need to understand that "psychosomatic" doesn't mean you don't have a real medical issue. What it means is you have a real medical condition with a completely different set of treatment options. Often ones that are easy, affordable, and in your control.