I’ve had chronic fatigue for long stretches my entire life, sometimes for years at a stretch. I think I would qualify for a CFS diagnosis, but no doctors treat it, so no one ever thought to diagnose me. They’d just say my tests are fine and shrug.
The fact of the matter is that the medical industry has no clue what to do about chronic health conditions like ME/CFS or Long COVID. They have no game plan at all. Everything I ever did to improve my symptoms and get my energy back was stuff I either did myself or just dumb luck that my body recovered.
> Instead of funding novel medicines like Ampligen, the NIH has directed most of its RECOVER resources to observational studies designed to learn more about the condition, not treat it.
So, this seems like a good decision. Observational studies aren’t giving up. They are the basis of the whole “evidence based medicine” pyramid of evidence.
It's come to fascinate me how modern medicine is simultaneously miracle-performing and devastatingly primitive. We can repair tiny structures, regrow organs, eradicate diseases from existence.
And yet, you could fall unwell with something like ME/CFS which ruins your life, and medicine has literally nothing to give. A total blind spot.
Perhaps a reality check that the human body is immensely complex, and medicine is not magic. We've just been doing our best all along, and we need to continue doing so with support for medicine and science.
I agree and disagree. Maintaining the health of a human body in a complex industrialized society is the most complex problem in the known universe. The amount of variables involved is astounding. But we’ve settled on a system that is more of a bureaucracy than a scientific endeavor and we wonder why it fails. We haven’t been doing our best. We could do better.
We should support science, but give up on medicine for health maintenance and chronic illness. Medicine as a practice is centered on curing acute illnesses and fixing acute injuries. I went to the emergency room recently for a really bad cut on my hand. The experience was fantastic. That’s the type of problem they know how to solve. It’s a completely different type of problem than a chronic illness, which depends on behaviors, environment, diet, exercise, etc.
And not just “you should exercise“. To recover my energy, I had to find just the right amount of the right type of exercise that would increase my energy without overexerting myself and making my symptoms worse. There’s no way that industrialized bureaucratic endeavor like modern medicine could help with that, unless of course I was rich. The medical industry can’t change. I’ve given up on it. We need a new science.
A loved one in my family was sick for years with a very painful chronic illness and all of the tests were completely useless except to rule out a myriad of possible causes. Thankfully she did happen upon a very effective treatment (Zoloft) and her quality of life is immensely improved now, with basically zero pain, and she’s able to function again. It was devastating to her health and she had nothing to go on whatsoever.
They also have a "Find a provider" page under "RESOURCES" section.
>covid19criticalcare.com
>The Front Line COVID-19 Critical Care Alliance (FLCCC) is a group of physicians and former journalists, formed in April 2020, that has advocated for various unapproved, dubious, and ineffective treatments for COVID-19 (e.g. hydroxychloroquine, ivermectin, and other miscellaneous combinations of drugs and vitamins).
This has very little to meaningfully do with anything, but I know someone that had long covid, and it ruined their life and career etc. because of barely being able to function more than a few "good" hours a day. They got covid again about two year later, was moderately sick for a week, and then completely healed, 100% back to normal. Absolutely blew my mind.
A lot of the hypotheses about Long <insert virus here> are about how well your body cleared the remnants. You can have a persistent reservoir of something for quite a long time until your body finally decides to clear it out.
One of the canonical examples of this are warts from HPV. There are documented cases of people having persistent infections until they "injured" a wart somehow, their body finally took notice, and then their body proceeded to completely clear all of them.
Modern medicine really does not deal with active viruses or their aftermath very well.
Perhaps this suggest that a treatment for long covid might be a new exposure to covid itself - or maybe a safer drug that mimics covid, like a vaccine or something analogous, that gives the benefit of "restarting" the immune response, but without the complications of real covid.
That's really interesting. I wonder if the immune system is modal - I know there are tons of systems in place that kick it into gear for response to an infection, so I guess its reasonable to assume that the body prefers to keep it as dormant as possible the rest of the time to minimise auotimmune disease risks and the like.
If these sorts of disorders creep in underneath it, and persist at a sufficiently low level not to trigger it, I suppose these things can hang around. I wonder why the immune system can't clear it out otherwise though (since presumable plenty of other immune systems have to always be active, to prevent infections from cuts and the like from being imminently fatal..)
I think a lot of the problem here is the stunning complexity of the immune systems in living systems. A huge part of our immune system isn't our own, it's other viruses and bacteria that live in symbiosis with us. The war of the viruses and bacteria was going on for billions of years before cells decided to clump together and make anything complicated.
If this is how it is, then that explains why all of the people I know who have Long Covid are hyper-neurotic people. They didn't get the repeat exposure to rid themselves of the other one.
I had long covid before, I was literally wasting away, I had no appetite, was losing weight rapidly, and my strength diminished everyday. I got out of it by force-feeding myself and forcing myself to do high-intensity exercise. My energy levels, I don't think they ever fully recovered, but I'm fine doing work and I do still exercise but not nearly as often as I used to. Nothing I can do about it, but I'm certain that the body works this way pretty reliably: you have to push until you die, and you will never know how far that is, so you just got to keep pushing and with some luck you'll grow ever stronger.
[deleted][deleted]
outrageous.
gov't should be massively funding at an absolutely epic scale
This is talking about private funding. The problem is that we don't have enough understanding to know where to start and private funding works very poorly in such situations.
And I'm sure public funding is tied up in politics. Covid is too politicized.
Senator Bernie Sanders has a plan with several co-sponsors to try to make a 10-year "long-covid moonshot" but given how politics work in this country it will never happen unless watered down to something useless and meaningless.
Well unless big pharma can cash out on it like crazy. Then it'll be a huge success.
Why? Is this a higher research priority than other medical conditions such as cancer or HIV? Are there plausible reasons to think that epic scale funding would significantly accelerate results?
I agree. We should research it at a level appropriate for the damage long covid is causing. Which is probably a lot, because it seems like a real thing that is impacting lots of people; but it's far from the most important medical problem we have.
This same phenomenon isn't unique to Covid either. Other illnesses can lead to similar debilitations. Research into this will give great insight into processes we hardly understand.
Of course it's not the #1 healthcare priority now but who says we should only solve problem #1 and leave all the others hanging?
I know a health worker that worked hard to save lives during the first phases of Covid and her life is now ruined due to this. I doubt she can be 'cured' but at least this may be prevented for others.
Higher? No. But causes of chronic fatigue like ME/CFS are already massively underfunded relative to their impact on society and people's lives. Both HIV and most types of cancer are pretty manageable nowadays while having a much lower QoL impact than LCOV or ME.
Further, many of those conditions share enough common traits that it's plausible that insights into one will generate insights into others.
I'd argue chronic conditions that are debilitating should have at least the same priority as cancer, assuming their prevalence in the general population is similar. Long covid is more like to affect productive age people compared to cancer, so a government would be wise to prioritize it.
I think he's being sarcastic.
Per Poe’s law, which most of the Hacker News community is familiar with, assume sarcasm doesn’t exist unless the commenter explicitly tells it’s sarcasm.
That seems really foolish. A certain percentage of the population will always have the latest, I have no energy and can’t work disease: long COVID, chronic fatigue syndrome, Lyme disease, fibromyalgia, gulf war syndrome, etc. Just wait a few years and it will be a whole new “epidemic”.
> Just wait a few years and it will be a whole new “epidemic”.
Considering COVID is still around and harming people... yes, yes it will, what are you even trying to say?
That everyone who's disabled due to undiagnosed fatigue and trying to find answers is just malingering?
If so, f you, that's a really bad faith argument.
[flagged]
So you stick to the party line despite vast evidence to the contrary?
My SIL has never been the same (her words) since she got it--note that she does *not* live in the US where it's a political issue.
The fundamental problem is that "Long Covid" is one of these "diagnoses" that are just a description of a widely varying set of symptoms and do not identify the actual problem. For a similar example consider AIDS. There we could at least identify the vector but until we discovered HIV we weren't very effective at dealing with it. This time around we know the underlying pathogen but not the mechanism of action.
SARS had many of the same lasting effects and was never thought to be hypochondria.
Wow, is long covid legit a "political issue" in the US??
With measurement of known biomarkers corresponding to well-established symptoms from decently well understood physiological damage which stems from the ability of the virus to do this and that. For instance.
How do you get out of bed in the morning? Do you fall out our do you have someone to assist you?
what biomarkers???
The outright rage you display combined with your inability to articulate any actual concrete details suggests to me this is a deeply emotional, psychological issue, and perhaps not a rational one.
I went looking for the outright rage you're talking about and I don't see any signs of it, given your small collection of replies with a decent number of them flagged are you sure that this isn't projection on your behalf?
When you have millions of formerly healthy, active people reporting the same thing, unable to get out of bed for more than a few hours a day, unable to do complicated tasks or do the things they enjoyed, something is clearly going on.
I had Chronic Fatigue Syndrome after getting Epstein-Barr virus as a teen. I was told by many doctors that it was not a real illness and it was all in my head. I tried to make myself believe that, and eventually convinced myself that I was indeed crazy. It took about a decade to recover enough that I can live life, but I still get exhausted easily. And during that time CFS became more widely accepted as a real illness.
Now doctors are saying there is a lot of similarity between CFS and Long COVID
The same way any other illness is, I guess
How is ignorance distinguished from stupidity??
[flagged]
It shows up in blood tests...
[deleted]
what markers?
It is very real and documented in many many many studies after four years now.
AI analysis of all those studies has come up with at least four different kinds.
Plenty of people like you who were deniers who end up getting it for years now, including many doctors themselves.
I’ve had chronic fatigue for long stretches my entire life, sometimes for years at a stretch. I think I would qualify for a CFS diagnosis, but no doctors treat it, so no one ever thought to diagnose me. They’d just say my tests are fine and shrug.
The fact of the matter is that the medical industry has no clue what to do about chronic health conditions like ME/CFS or Long COVID. They have no game plan at all. Everything I ever did to improve my symptoms and get my energy back was stuff I either did myself or just dumb luck that my body recovered.
> Instead of funding novel medicines like Ampligen, the NIH has directed most of its RECOVER resources to observational studies designed to learn more about the condition, not treat it.
So, this seems like a good decision. Observational studies aren’t giving up. They are the basis of the whole “evidence based medicine” pyramid of evidence.
It's come to fascinate me how modern medicine is simultaneously miracle-performing and devastatingly primitive. We can repair tiny structures, regrow organs, eradicate diseases from existence. And yet, you could fall unwell with something like ME/CFS which ruins your life, and medicine has literally nothing to give. A total blind spot.
Perhaps a reality check that the human body is immensely complex, and medicine is not magic. We've just been doing our best all along, and we need to continue doing so with support for medicine and science.
I agree and disagree. Maintaining the health of a human body in a complex industrialized society is the most complex problem in the known universe. The amount of variables involved is astounding. But we’ve settled on a system that is more of a bureaucracy than a scientific endeavor and we wonder why it fails. We haven’t been doing our best. We could do better.
We should support science, but give up on medicine for health maintenance and chronic illness. Medicine as a practice is centered on curing acute illnesses and fixing acute injuries. I went to the emergency room recently for a really bad cut on my hand. The experience was fantastic. That’s the type of problem they know how to solve. It’s a completely different type of problem than a chronic illness, which depends on behaviors, environment, diet, exercise, etc.
And not just “you should exercise“. To recover my energy, I had to find just the right amount of the right type of exercise that would increase my energy without overexerting myself and making my symptoms worse. There’s no way that industrialized bureaucratic endeavor like modern medicine could help with that, unless of course I was rich. The medical industry can’t change. I’ve given up on it. We need a new science.
A loved one in my family was sick for years with a very painful chronic illness and all of the tests were completely useless except to rule out a myriad of possible causes. Thankfully she did happen upon a very effective treatment (Zoloft) and her quality of life is immensely improved now, with basically zero pain, and she’s able to function again. It was devastating to her health and she had nothing to go on whatsoever.
Zoloft does have some very strange applications
https://covid19criticalcare.com/protocol/i-recover-long-covi...
They also have a "Find a provider" page under "RESOURCES" section.
>covid19criticalcare.com
>The Front Line COVID-19 Critical Care Alliance (FLCCC) is a group of physicians and former journalists, formed in April 2020, that has advocated for various unapproved, dubious, and ineffective treatments for COVID-19 (e.g. hydroxychloroquine, ivermectin, and other miscellaneous combinations of drugs and vitamins).
https://en.wikipedia.org/wiki/Front_Line_COVID-19_Critical_C...
This has very little to meaningfully do with anything, but I know someone that had long covid, and it ruined their life and career etc. because of barely being able to function more than a few "good" hours a day. They got covid again about two year later, was moderately sick for a week, and then completely healed, 100% back to normal. Absolutely blew my mind.
A lot of the hypotheses about Long <insert virus here> are about how well your body cleared the remnants. You can have a persistent reservoir of something for quite a long time until your body finally decides to clear it out.
One of the canonical examples of this are warts from HPV. There are documented cases of people having persistent infections until they "injured" a wart somehow, their body finally took notice, and then their body proceeded to completely clear all of them.
Modern medicine really does not deal with active viruses or their aftermath very well.
Perhaps this suggest that a treatment for long covid might be a new exposure to covid itself - or maybe a safer drug that mimics covid, like a vaccine or something analogous, that gives the benefit of "restarting" the immune response, but without the complications of real covid.
That's really interesting. I wonder if the immune system is modal - I know there are tons of systems in place that kick it into gear for response to an infection, so I guess its reasonable to assume that the body prefers to keep it as dormant as possible the rest of the time to minimise auotimmune disease risks and the like.
If these sorts of disorders creep in underneath it, and persist at a sufficiently low level not to trigger it, I suppose these things can hang around. I wonder why the immune system can't clear it out otherwise though (since presumable plenty of other immune systems have to always be active, to prevent infections from cuts and the like from being imminently fatal..)
I think a lot of the problem here is the stunning complexity of the immune systems in living systems. A huge part of our immune system isn't our own, it's other viruses and bacteria that live in symbiosis with us. The war of the viruses and bacteria was going on for billions of years before cells decided to clump together and make anything complicated.
If this is how it is, then that explains why all of the people I know who have Long Covid are hyper-neurotic people. They didn't get the repeat exposure to rid themselves of the other one.
I had long covid before, I was literally wasting away, I had no appetite, was losing weight rapidly, and my strength diminished everyday. I got out of it by force-feeding myself and forcing myself to do high-intensity exercise. My energy levels, I don't think they ever fully recovered, but I'm fine doing work and I do still exercise but not nearly as often as I used to. Nothing I can do about it, but I'm certain that the body works this way pretty reliably: you have to push until you die, and you will never know how far that is, so you just got to keep pushing and with some luck you'll grow ever stronger.
outrageous.
gov't should be massively funding at an absolutely epic scale
This is talking about private funding. The problem is that we don't have enough understanding to know where to start and private funding works very poorly in such situations.
And I'm sure public funding is tied up in politics. Covid is too politicized.
Senator Bernie Sanders has a plan with several co-sponsors to try to make a 10-year "long-covid moonshot" but given how politics work in this country it will never happen unless watered down to something useless and meaningless.
https://longcovidmoonshot.com/
Well unless big pharma can cash out on it like crazy. Then it'll be a huge success.
Why? Is this a higher research priority than other medical conditions such as cancer or HIV? Are there plausible reasons to think that epic scale funding would significantly accelerate results?
I agree. We should research it at a level appropriate for the damage long covid is causing. Which is probably a lot, because it seems like a real thing that is impacting lots of people; but it's far from the most important medical problem we have.
This same phenomenon isn't unique to Covid either. Other illnesses can lead to similar debilitations. Research into this will give great insight into processes we hardly understand.
Of course it's not the #1 healthcare priority now but who says we should only solve problem #1 and leave all the others hanging?
I know a health worker that worked hard to save lives during the first phases of Covid and her life is now ruined due to this. I doubt she can be 'cured' but at least this may be prevented for others.
Higher? No. But causes of chronic fatigue like ME/CFS are already massively underfunded relative to their impact on society and people's lives. Both HIV and most types of cancer are pretty manageable nowadays while having a much lower QoL impact than LCOV or ME.
Further, many of those conditions share enough common traits that it's plausible that insights into one will generate insights into others.
I'd argue chronic conditions that are debilitating should have at least the same priority as cancer, assuming their prevalence in the general population is similar. Long covid is more like to affect productive age people compared to cancer, so a government would be wise to prioritize it.
I think he's being sarcastic.
Per Poe’s law, which most of the Hacker News community is familiar with, assume sarcasm doesn’t exist unless the commenter explicitly tells it’s sarcasm.
That seems really foolish. A certain percentage of the population will always have the latest, I have no energy and can’t work disease: long COVID, chronic fatigue syndrome, Lyme disease, fibromyalgia, gulf war syndrome, etc. Just wait a few years and it will be a whole new “epidemic”.
> Just wait a few years and it will be a whole new “epidemic”.
Considering COVID is still around and harming people... yes, yes it will, what are you even trying to say?
That everyone who's disabled due to undiagnosed fatigue and trying to find answers is just malingering?
If so, f you, that's a really bad faith argument.
[flagged]
So you stick to the party line despite vast evidence to the contrary?
My SIL has never been the same (her words) since she got it--note that she does *not* live in the US where it's a political issue.
The fundamental problem is that "Long Covid" is one of these "diagnoses" that are just a description of a widely varying set of symptoms and do not identify the actual problem. For a similar example consider AIDS. There we could at least identify the vector but until we discovered HIV we weren't very effective at dealing with it. This time around we know the underlying pathogen but not the mechanism of action.
SARS had many of the same lasting effects and was never thought to be hypochondria.
Wow, is long covid legit a "political issue" in the US??
With measurement of known biomarkers corresponding to well-established symptoms from decently well understood physiological damage which stems from the ability of the virus to do this and that. For instance.
How do you get out of bed in the morning? Do you fall out our do you have someone to assist you?
what biomarkers???
The outright rage you display combined with your inability to articulate any actual concrete details suggests to me this is a deeply emotional, psychological issue, and perhaps not a rational one.
I went looking for the outright rage you're talking about and I don't see any signs of it, given your small collection of replies with a decent number of them flagged are you sure that this isn't projection on your behalf?
When you have millions of formerly healthy, active people reporting the same thing, unable to get out of bed for more than a few hours a day, unable to do complicated tasks or do the things they enjoyed, something is clearly going on.
I had Chronic Fatigue Syndrome after getting Epstein-Barr virus as a teen. I was told by many doctors that it was not a real illness and it was all in my head. I tried to make myself believe that, and eventually convinced myself that I was indeed crazy. It took about a decade to recover enough that I can live life, but I still get exhausted easily. And during that time CFS became more widely accepted as a real illness.
Now doctors are saying there is a lot of similarity between CFS and Long COVID
The same way any other illness is, I guess
How is ignorance distinguished from stupidity??
[flagged]
It shows up in blood tests...
what markers?
It is very real and documented in many many many studies after four years now.
AI analysis of all those studies has come up with at least four different kinds.
Plenty of people like you who were deniers who end up getting it for years now, including many doctors themselves.
https://covid19.nih.gov/news-and-stories/researchers-identif...
Classic reaction of incompetent and arrogant doctors: "I don't know what that is so it's fake/in your head/your fault/etc."
[flagged]