29 ms·

There needs to be more research into this horrible disease. There are no yet confirmed biomarkers for it, so doctors dismiss patients as crazy or "making it up.

There needs to be more research into this horrible disease. There are no yet confirmed biomarkers for it, so doctors dismiss patients as crazy or "making it up." Once there is a biomarker, perhaps like this protein, we can actually start testing treatments to see what works. The scary thing is that there seems to be a vicious path, of COVID->long COVID->ME/CFS. We're not sure what makes COVID evolve into long COVID, which also means we have no idea how many people who catch COVID eventually wind up with long COVID or ME/CFS. And there is a total media blackout on the topic, seemingly because politicians don't want to admit they fucked up. Hopefully once there is a way to verifiably test for it, a lot of things will change for the better.

manmal 3y ago
Just an observational study (FWIW), but microbiome defects could play a role in development of long COVID: https://gut.bmj.com/content/71/3/544 https://gut.bmj.com/content/71/3/544
Madmallard 3y ago
they could do transport chain simulation with blood or muscle samples most likely but it would require expensive equipment so not really feasible if a million people have it perhaps organic acids testing could show something?
maxehmookau 3y ago
> doctors dismiss patients as crazy or "making it up." I don't think that's true, at least not in my experience anyway. People (myself included) are too quick to conflate "all in your head" with "making it up". Things "in your head" can and do have real, physical, life-limiting, effects. If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer.
- j_maffe 3y ago
  Yes but recent studies have shown that it's neither of those, meaning that the symptoms are physiological. Not that I'm dismissing the importance of proper care of people with my psychiatric issues with fatigue or pain, it just doesn't apply to ME/CFS/LC anymore.
  - cpncrunch 3y ago
    Which studies have been replicated?
- krisoft 3y ago
  > If it turns out that ME/CFS doesn't has a physical marker, then what? The problem is that ME/CFS is similar in presentation to other conditions such as for example certain kinds of depression. The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS. Thus there are two different groups of people, one who you are helping by encouraging them to exercise and one who you are harming. If you can't tell them apart the system is bound to hurt someone.
  - GordonS 3y ago
    PEM (post-exertional malaise) is a core symptom of ME/CFS, but I've never heard of it being a symptom of depression. IME it's more correct to say that depression can be a symptom of ME/CFS - having your life blow up can do that.
    - rocqua 3y ago
      The point was that for depression, exercise is a treatment. Whilst for ME/CFS, exercise is harmful. Hence it is important to make a distinction between the two, so you give proper treatment.
    - soudiere 3y ago
      Post-exertional malaise is a poor diagnostic indicator, the sensitivity and specificity are quite low. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ First problem, I do not have ME/CFS, let's use the Maes et al (2012) scale. 0-5 scale, 5 being the worst. "1 means mild exacerbations of fatigue/pain/neurocognitive symptoms following exercise (either cognitive or physical)" Yep, after a longer, harder than normal bike ride I'm quite fatigued, in quite a bit of pain (bad back, knee, shoulder), and can't think particularly well. "2 means moderate exacerbations of symptoms following exercise; 3 means severe, incapacitating exacerbations lasting less than 24 hours;" Accurately describes what happens when I do HIIT style intervals that exceed my work capacity, or what it's extremely hot outside. Dreadfully exhausted, usually have to nap, or lay on the couch, every muscle hurts, extremely sore, difficult & painful to move for 24-72 hours. I'm not saying ME/CFS does not exist, this is just a terrible indicator. The worst part is making it so specific obscures the large body of existing research that would provide tools for treatment protocols here, eg work capacity in athletes.
- aestetix 3y ago
  > If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer. To me, this argument does not make sense. Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. There is clearly some kind of imbalance, somewhere. We use biomarkers like CRP levels to determine whether someone has an infection, others for cancer, or any other disease. Why would it be different for this? If we can identify some kind of biomarker... be it a protein, something in the blood, etc, and link it to COVID, then we can start testing treatments to see how they impact the biomarker.
  - maxehmookau 3y ago
    > Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. I didn't really make an argument to "not make sense". Right now, ME/CFS may just be a collection of symptoms rather than a specific _thing_ that can be tracked, measures and cured. Or it may be a specific infection. We don't know. Sure, it's compelling. But the plural of anecdote isn't data. It may seem obvious, but so far we haven't found the biomarker yet and must surely keep an open mind that one may not exist. I'm not saying we should stop looking, but that the thing we're looking for may not appear.
    - aestetix 3y ago
      Ah, I see what you're saying. I think a more logical approach (for me) would be to say that there might be multiple biomarkers which could present ME/CFS type symptoms in different ways. Dr. Bhupesh Prusty has recently given some lectures on his discoveries related to Fibernectin, for example. That could be a massive breakthrough, but we need more studies on it. One other data point that might interest you: apparently a large percentage of ME/CFS patients are finding relief through valtrex. Apparently there is some relation to the herpes virus, although nobody understands how or why.
- PaulKeeble 3y ago
  The name ME comes from the observation in the 1950s that the brain stem was inflamed as shown on CT scans run in the Royal free hospital in London (what is now called St Thomas' hospital). In the 1980s they found numerous immune and metabolic dysfunctions in sufferers as well and the list of physiological things wrong has steady increased since. Yet mostly doctors have treated patients with psychology and tried to force them to exercise despite being intolerant to it and despite thousands of papers showing the biology of the disease. None of what medicine has done can be justified, it ignores all the science and evidence.
  - darrenf 3y ago
    > the Royal free hospital in London (what is now called St Thomas' hospital) ??? The Royal Free is in Hampstead, and still exists. St Thomas’ is on the south bank of the Thames at Westminster bridge.
  - maxehmookau 3y ago
    Your comment kinda casts doctors as the boogiemen though and I struggle to understand the motive for them to act in this way. Doctors, generally, want the best outcome for their patients. I find it hard to believe that they're doing something actively harmful that's against accepted best practices, informed by scientific literature, because... they hate their patients? If there truely were thousands of papers showing a specific biology for the disease that could be targeted and treated why would any doctor ignore that?
    - hotdogscout 3y ago
      Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices. Any illness with primarily neurological symptoms have a history of medical malpractice and gaslighting. As early as 1944, an author in the Journal of Nervous and Mental Disease remarked: "The history of prefrontal lobotomy has been brief and stormy. Its course has been dotted with both violent opposition and with slavish, unquestioning acceptance." The last recorded lobotomy in the United States was performed by Dr. Walter Freeman in 1967 and ended in the death of the person on whom it was performed. https://en.m.wikipedia.org/wiki/Lobotomy https://en.m.wikipedia.org/wiki/Lobotomy
worrycue 3y ago
> seemingly because politicians don't want to admit they fucked up How did politicians fuck up?
- aestetix 3y ago
  The two easy areas I can cite are the lackluster results of the RECOVER initiative (https://erictopol.substack.com/p/long-covid-mitochondria-the-big-miss https://erictopol.substack.com/p/long-covid-mitochondria-the...), and the complete failure of any government to distribute vaccines well. Another: 19 September 2022, US President Biden declares COVID to be "over" https://www.youtube.com/watch?v=tHT1enFH2sI https://www.youtube.com/watch?v=tHT1enFH2sI Meanwhile, it is easy to get Pfizer and Moderna vaccines (mRNA based), and hard to get Novavax (protein based). By hard I mean impossible. mRNA are not well understood, have nasty side effects for some people (including me), and lose their efficacy after a few months, thus the need for boosters. You can verify this with blood tests that show antibody levels. With Novavax, which is based on technology that's been around for 20 years, it appears (based on studies) that it keeps its efficacy for at least a year after multiple doses, and it has minimal side effects (including my own shot). That said, many governments have relationships with Pfizer and Moderna, and so these vaccines are easily attainable, while no such relationship exists with Novavax, and it is impossible to get it. I say impossible after asking about 50 doctors, contacting pharmacies, and finally contacting Novavax themselves, who told me that it is not possible to get until the new mix comes out. So why would a vaccine that seems to actually work be unavailable, while ones that do not work are easy to get? I realize that this is more a commentary on COVID than ME/CFS, but I'm arguing that they are very similar. Just consider Physics Girl, who contracted COVID a year ago, and is now bed bound: https://www.youtube.com/watch?v=vydgkCCXbTA https://www.youtube.com/watch?v=vydgkCCXbTA
- rocqua 3y ago
  Probably GP meant they fucked up by downplaying the danger's of COVID and doing the least possible to keep the hospitals from overflowing. Where, instead, they should have done more to prevent people from getting COVID.
  - hollerith 3y ago
circlefavshape 3y ago
> doctors dismiss patients as crazy or "making it up" It's very easy to frame what doctors say like this, but in my experience at least that's not really what they're doing. A doctor is a classification machine - they take your symptoms as inputs and output a disease or a syndrome, hopefully with mitigation measures associated with it. When my wife had long covid for 3 years and doctors couldn't find anything wrong with her a neurologist diagnosed her with a "functional neurological disorder" and suggested psychiatry. My wife felt dismissed and was really mad about it, but the reality is that some sets of symptoms are psychosomatic, and psychiatry can help, so if the neurologist saw 100 people with my wife's symptoms and made the same recommendation to them all, some of them would benefit (as opposed to her making no diagnosis and none of them benefiting)
- Steuard 3y ago
  Sometimes it is exactly what they're doing. 15 years ago, shortly after surgery to remove a tumor from my femur, I ran into a physical therapy assistant whom I'd been working with when my doctors thought my leg pain was a soft tissue problem. He said he'd heard about my surgery and was glad I was doing well, and then as we parted ways he cheerfully commented offhand that when I'd been working with him and his supervisor, "I thought you were making it all up!" (I still feel angry about that occasionally, all these years later.)
  - flyinglizard 3y ago
    Statistically speaking, you were making that all up. Of course in your case it turned out to be serious, but think about how negligible the odds of that are when you're seeing dozens of patients a day during your career.
    - sp332 3y ago
      Why would any of those patients make up being in pain, let alone... most of them?
      - 3y ago
qbxk 3y ago
my pet theory is that long covid is associated with an autoimmunity to the ACE hormone. If covid uses the ACE2 receptor to enter your cell, the spike protein must resemble a portion of the ACE hormone, and it's easy for your immune system to "miss" and attack the wrong thing. Once you are "allergic" to your own hormones, you have two problems: 1) chronic immune response and inflammation and 2) lack of effectiveness of ACE due to it being removed or disabled by your immune system
- candiodari 3y ago
  With a disabled RAAS pathway, you die. Quickly. And that's ignoring that there is a mechanism normally preventing this. And what happens when you become allergic to your own hormones is called a cytokine storm ... and it's serious enough that you can say comfortably that no doctor will miss it.
  - qbxk 3y ago
    we're not talking about disabling an RAAS pathway though, we're just talking about interfering with it and making it less effective. it's a gradient of many shades
- csours 3y ago
  According to medical professionals I trust, Long Covid is likely to be multiple diseases with multiple causes, and any individual can have some of each. Autoimmune reactions may be the longest covid; cell/organ damage is another; it is also possible that people may have less-than clinically detectable viral activity, or viral activity in some "pocket". I'm not a medical professional, this is not medical advice.
ck2 3y ago
It's worse than that, they developed a test and then didn't fund it. https://www.nih.gov/news-events/nih-research-matters/blood-test-may-detect-myalgic-encephalomyelitis/chronic-fatigue-syndrome https://www.nih.gov/news-events/nih-research-matters/blood-t...

manmal 3y ago

Just an observational study (FWIW), but microbiome defects could play a role in development of long COVID: https://gut.bmj.com/content/71/3/544 https://gut.bmj.com/content/71/3/544

Madmallard 3y ago

they could do transport chain simulation with blood or muscle samples most likely but it would require expensive equipment so not really feasible if a million people have it perhaps organic acids testing could show something?

maxehmookau 3y ago

> doctors dismiss patients as crazy or "making it up." I don't think that's true, at least not in my experience anyway. People (myself included) are too quick to conflate "all in your head" with "making it up". Things "in your head" can and do have real, physical, life-limiting, effects. If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer.

j_maffe 3y ago
Yes but recent studies have shown that it's neither of those, meaning that the symptoms are physiological. Not that I'm dismissing the importance of proper care of people with my psychiatric issues with fatigue or pain, it just doesn't apply to ME/CFS/LC anymore.
- cpncrunch 3y ago
  Which studies have been replicated?
krisoft 3y ago
> If it turns out that ME/CFS doesn't has a physical marker, then what? The problem is that ME/CFS is similar in presentation to other conditions such as for example certain kinds of depression. The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS. Thus there are two different groups of people, one who you are helping by encouraging them to exercise and one who you are harming. If you can't tell them apart the system is bound to hurt someone.
- GordonS 3y ago
  PEM (post-exertional malaise) is a core symptom of ME/CFS, but I've never heard of it being a symptom of depression. IME it's more correct to say that depression can be a symptom of ME/CFS - having your life blow up can do that.
  - rocqua 3y ago
    The point was that for depression, exercise is a treatment. Whilst for ME/CFS, exercise is harmful. Hence it is important to make a distinction between the two, so you give proper treatment.
  - soudiere 3y ago
    Post-exertional malaise is a poor diagnostic indicator, the sensitivity and specificity are quite low. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ First problem, I do not have ME/CFS, let's use the Maes et al (2012) scale. 0-5 scale, 5 being the worst. "1 means mild exacerbations of fatigue/pain/neurocognitive symptoms following exercise (either cognitive or physical)" Yep, after a longer, harder than normal bike ride I'm quite fatigued, in quite a bit of pain (bad back, knee, shoulder), and can't think particularly well. "2 means moderate exacerbations of symptoms following exercise; 3 means severe, incapacitating exacerbations lasting less than 24 hours;" Accurately describes what happens when I do HIIT style intervals that exceed my work capacity, or what it's extremely hot outside. Dreadfully exhausted, usually have to nap, or lay on the couch, every muscle hurts, extremely sore, difficult & painful to move for 24-72 hours. I'm not saying ME/CFS does not exist, this is just a terrible indicator. The worst part is making it so specific obscures the large body of existing research that would provide tools for treatment protocols here, eg work capacity in athletes.
aestetix 3y ago
> If it turns out that ME/CFS doesn't has a physical marker, then what? There may never be a way to verifiably test for it other than symptomatically. It's no less real for the people living with the effects, but there may be no pill to take, or injection to administer. To me, this argument does not make sense. Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. There is clearly some kind of imbalance, somewhere. We use biomarkers like CRP levels to determine whether someone has an infection, others for cancer, or any other disease. Why would it be different for this? If we can identify some kind of biomarker... be it a protein, something in the blood, etc, and link it to COVID, then we can start testing treatments to see how they impact the biomarker.
- maxehmookau 3y ago
  > Consider the example of Physics Girl (I linked the video in another comment). The video shows her before COVID, and after COVID. It's obvious that her COVID infection did something to cause her to go from being an amateur astronaut to being bed-bound. I didn't really make an argument to "not make sense". Right now, ME/CFS may just be a collection of symptoms rather than a specific _thing_ that can be tracked, measures and cured. Or it may be a specific infection. We don't know. Sure, it's compelling. But the plural of anecdote isn't data. It may seem obvious, but so far we haven't found the biomarker yet and must surely keep an open mind that one may not exist. I'm not saying we should stop looking, but that the thing we're looking for may not appear.
  - aestetix 3y ago
    Ah, I see what you're saying. I think a more logical approach (for me) would be to say that there might be multiple biomarkers which could present ME/CFS type symptoms in different ways. Dr. Bhupesh Prusty has recently given some lectures on his discoveries related to Fibernectin, for example. That could be a massive breakthrough, but we need more studies on it. One other data point that might interest you: apparently a large percentage of ME/CFS patients are finding relief through valtrex. Apparently there is some relation to the herpes virus, although nobody understands how or why.
PaulKeeble 3y ago
The name ME comes from the observation in the 1950s that the brain stem was inflamed as shown on CT scans run in the Royal free hospital in London (what is now called St Thomas' hospital). In the 1980s they found numerous immune and metabolic dysfunctions in sufferers as well and the list of physiological things wrong has steady increased since. Yet mostly doctors have treated patients with psychology and tried to force them to exercise despite being intolerant to it and despite thousands of papers showing the biology of the disease. None of what medicine has done can be justified, it ignores all the science and evidence.
- darrenf 3y ago
  > the Royal free hospital in London (what is now called St Thomas' hospital) ??? The Royal Free is in Hampstead, and still exists. St Thomas’ is on the south bank of the Thames at Westminster bridge.
- maxehmookau 3y ago
  Your comment kinda casts doctors as the boogiemen though and I struggle to understand the motive for them to act in this way. Doctors, generally, want the best outcome for their patients. I find it hard to believe that they're doing something actively harmful that's against accepted best practices, informed by scientific literature, because... they hate their patients? If there truely were thousands of papers showing a specific biology for the disease that could be targeted and treated why would any doctor ignore that?
  - hotdogscout 3y ago
    Unwillingness to admit they don't know what's happening, memes, resentment of criticism after malpractices. Any illness with primarily neurological symptoms have a history of medical malpractice and gaslighting. As early as 1944, an author in the Journal of Nervous and Mental Disease remarked: "The history of prefrontal lobotomy has been brief and stormy. Its course has been dotted with both violent opposition and with slavish, unquestioning acceptance." The last recorded lobotomy in the United States was performed by Dr. Walter Freeman in 1967 and ended in the death of the person on whom it was performed. https://en.m.wikipedia.org/wiki/Lobotomy https://en.m.wikipedia.org/wiki/Lobotomy

worrycue 3y ago

> seemingly because politicians don't want to admit they fucked up How did politicians fuck up?

aestetix 3y ago
The two easy areas I can cite are the lackluster results of the RECOVER initiative (https://erictopol.substack.com/p/long-covid-mitochondria-the-big-miss https://erictopol.substack.com/p/long-covid-mitochondria-the...), and the complete failure of any government to distribute vaccines well. Another: 19 September 2022, US President Biden declares COVID to be "over" https://www.youtube.com/watch?v=tHT1enFH2sI https://www.youtube.com/watch?v=tHT1enFH2sI Meanwhile, it is easy to get Pfizer and Moderna vaccines (mRNA based), and hard to get Novavax (protein based). By hard I mean impossible. mRNA are not well understood, have nasty side effects for some people (including me), and lose their efficacy after a few months, thus the need for boosters. You can verify this with blood tests that show antibody levels. With Novavax, which is based on technology that's been around for 20 years, it appears (based on studies) that it keeps its efficacy for at least a year after multiple doses, and it has minimal side effects (including my own shot). That said, many governments have relationships with Pfizer and Moderna, and so these vaccines are easily attainable, while no such relationship exists with Novavax, and it is impossible to get it. I say impossible after asking about 50 doctors, contacting pharmacies, and finally contacting Novavax themselves, who told me that it is not possible to get until the new mix comes out. So why would a vaccine that seems to actually work be unavailable, while ones that do not work are easy to get? I realize that this is more a commentary on COVID than ME/CFS, but I'm arguing that they are very similar. Just consider Physics Girl, who contracted COVID a year ago, and is now bed bound: https://www.youtube.com/watch?v=vydgkCCXbTA https://www.youtube.com/watch?v=vydgkCCXbTA
rocqua 3y ago
Probably GP meant they fucked up by downplaying the danger's of COVID and doing the least possible to keep the hospitals from overflowing. Where, instead, they should have done more to prevent people from getting COVID.
- hollerith 3y ago

circlefavshape 3y ago

> doctors dismiss patients as crazy or "making it up" It's very easy to frame what doctors say like this, but in my experience at least that's not really what they're doing. A doctor is a classification machine - they take your symptoms as inputs and output a disease or a syndrome, hopefully with mitigation measures associated with it. When my wife had long covid for 3 years and doctors couldn't find anything wrong with her a neurologist diagnosed her with a "functional neurological disorder" and suggested psychiatry. My wife felt dismissed and was really mad about it, but the reality is that some sets of symptoms are psychosomatic, and psychiatry can help, so if the neurologist saw 100 people with my wife's symptoms and made the same recommendation to them all, some of them would benefit (as opposed to her making no diagnosis and none of them benefiting)

Steuard 3y ago
Sometimes it is exactly what they're doing. 15 years ago, shortly after surgery to remove a tumor from my femur, I ran into a physical therapy assistant whom I'd been working with when my doctors thought my leg pain was a soft tissue problem. He said he'd heard about my surgery and was glad I was doing well, and then as we parted ways he cheerfully commented offhand that when I'd been working with him and his supervisor, "I thought you were making it all up!" (I still feel angry about that occasionally, all these years later.)
- flyinglizard 3y ago
  Statistically speaking, you were making that all up. Of course in your case it turned out to be serious, but think about how negligible the odds of that are when you're seeing dozens of patients a day during your career.
  - sp332 3y ago
    Why would any of those patients make up being in pain, let alone... most of them?
    - 3y ago

qbxk 3y ago

my pet theory is that long covid is associated with an autoimmunity to the ACE hormone. If covid uses the ACE2 receptor to enter your cell, the spike protein must resemble a portion of the ACE hormone, and it's easy for your immune system to "miss" and attack the wrong thing. Once you are "allergic" to your own hormones, you have two problems: 1) chronic immune response and inflammation and 2) lack of effectiveness of ACE due to it being removed or disabled by your immune system

candiodari 3y ago
With a disabled RAAS pathway, you die. Quickly. And that's ignoring that there is a mechanism normally preventing this. And what happens when you become allergic to your own hormones is called a cytokine storm ... and it's serious enough that you can say comfortably that no doctor will miss it.
- qbxk 3y ago
  we're not talking about disabling an RAAS pathway though, we're just talking about interfering with it and making it less effective. it's a gradient of many shades
csours 3y ago
According to medical professionals I trust, Long Covid is likely to be multiple diseases with multiple causes, and any individual can have some of each. Autoimmune reactions may be the longest covid; cell/organ damage is another; it is also possible that people may have less-than clinically detectable viral activity, or viral activity in some "pocket". I'm not a medical professional, this is not medical advice.

ck2 3y ago

It's worse than that, they developed a test and then didn't fund it. https://www.nih.gov/news-events/nih-research-matters/blood-test-may-detect-myalgic-encephalomyelitis/chronic-fatigue-syndrome https://www.nih.gov/news-events/nih-research-matters/blood-t...