The exact nature of long COVID is still coming to light, but we just got some of the best evidence yet that this debilitating condition stems from a brain injury.
Oh, sorry, I really wasn’t clear & just randomly regurgitated from my brainhole wrote the thought I thought people (not you specifically) should be aware-ish of (psa, kinda, about how getting depressed is normal and healthy but that clinical depression is something else - but thats hard to explain to people not afflicted by it & using the case of fatigue + your quote seemed like a good place for it … perhaps if I started with “we all get depressed”).
I wrote it after I’ve already seen your explanation (it felt like a reference anyway) - but now reading what/how tf I replied it absolutely looks like Im explaining you basic human stuff.
It’s the line from the sketch (it’s the only one I know of from the early 2000s about it). Jesus is healing people of various ailments and someone says they have ME and he responds “well, we all get tired”.
Lifelong disease usually triggered by viral infections.
Known immune abnormalities which seem to affect the brain and mitochondria. I think @Neurologist@mander.xyz is specialised in it.
Also “chronic fatigue syndrome” was the name back when it was classified as psychological. Now that it’s classified as neuroimmune the name has been changed to Myalgic Encephalomyelitsis.
Couldn’t have said it better. And yes, science journalism often is basically repeating and dumbing down what a study says, but in science, and especially in medicine, a lot of studies tend to be wrong, make false assumptions, or overstate their findings, while journalists tend to take them for their word. There’s a reason you hear of a new cancer treatment in the news every other week but few actually make it past FDA approval.
We don’t really know. But theres a giant GWAS (Genome Wide Association Study) called Decode ME with I think upwards of 25’000 pariticpants which is coming out in the next year. So we’ll know a whole lot more then. Hopefully it might lead to treatments.
Seems like it generally just gets triggered by a viral infection, but obviously it’s hard to find conclusive evidence for that as people get viral infections all the time and usually recover fine. In a way COVID was a useful ‘experiment’ where we got a lot of cases of people getting long COVID right after a confirmed infection (because everyone was getting tested, which you typically wouldn’t do for your average viral infection).
that makes sense, we must have so much new data on how viruses affects humanity as a whole because of the global testing going on so long for so many people.
Yeah. Atleast 50% report an onset right after a viral infection. And it’s not impossible to assume the other 50% were caused by viral infections too but the patient didn’t make the connection. Obviously we don’t really know yet.
Yeah, would be hard to prove unless people started routinely testing themselves for a broad array of viruses every time they fall ill.
But hopefully with the influx of long COVID patients more research will be done, and people with CFS, fibromyalgia and similar diseases will at least be believed, because all of those are typically dismissed because you can’t really see it.
CFS is a syndrome rather than a disease because, until recently, it only presented as symptoms instead of as an identifiable problem with a person. I know that a some people who get diagnosed for CFS get later diagnoses as neurological disorders like multiple sclerosis.
It sounds like the more powerful MRI scanners are seeing inflammation in the rest of those suffering from CFS.
That would mean CFS is a lifelong degenerative condition.
Hey I’m a researcher who works on ME (in the past called CFS).
ME/CFS is currently classified as a disease/biological illness according to the CDC.
ME is a disease state in itself. We don’t know much about it, but it can’t be explained by other diagnoses, as the defining factor, neuro-immune abnormalities including immune activation showing up post exertion is unique to it. You’re completely right that we don’t yet have a reliable biomarker. We have a test that differentiates from healthy controls, but it was discontinued for ethical reasons because conducting the test leads to a sometimes permanent worsening of the illness.
In the past it’s been mixed up and jumbled a lot, but the picture is getting clearer.
There have been a few case reports of degenerative forms of the illness. But in general it takes a more classical relapsing remitting pattern. Although even in less bad stages some patients are severely functionally disabled, even bedridden and tubefed. It has a really wide range of severities with the least severely affected able to work part time and walk and travel, while the most severe might not even be able to communicate.
For me to be a better friend by better understanding his new limitations…
He already has a good support network, they organised a fundraiser to get him an electric wheelchair, which is awesome! But at first I didn’t understand why it was helping him, because I don’t know enough about the condition. 🫣
This channel has a bunch of short (5 mins long videos) about ME to educate people.
There’s also a slightly outdated (but still worth the watch) oscar nominated documentary about it, which has been made free and put on youtube recently It’s Unrest by Jennifer Brea
One of my patients also runs this excellent website with a bunch of resources about the disease.
Hey I’d really love to go into a short (although not necessarily immediate) exchange with you. I have MS diagnosed, recently died (not kidding) possibly due to PROMM and also yet another neurological skin disease and am wondering if my head should maybe be scanned differently now in this context.
I’m sorry I really shouldn’t be giving medical advice. It’s been a long time since I studied neurology. I’ve spent the past decade only on post viral diseases like ME.
But please please find yourself a doctor that listens and cares if that is possible. Because it clearly sounds like you need tests and you need a doc thats available for you. Maybe join some local MS support groups and ask if anyone has docs that do a really good job and try from there.
I’ll tell you this as a doctor. I would stay the hell away from some of my colleagues. Not every doctor is anywhere near good at their jobs. Some don’t care, some barely passed and don’t want to learn anything new, some like to always assume their patients have psychological problems. Find yourself a good doctor who is proactive and cares, and everything will be so much easier. Sending you good luck.
this is the extent of what I knew about CFS, I never heard of ME, I thought CFE was still a collection of symptoms that didn’t even indicate a single underlying syndrome.
I like the progress, clearly seeing brain stem inflammation sounds like comic book talk from 20 years ago.
they’re going to see inflamed dendrites next.
oh but isn’t clogged dendrites how they identify multiple sclerosis already?
clearly I have to read more about this. catch up a bit.
A collection of symptoms is a syndrome. Once there is a known definite cause, reclassification as a disease can take place. Lay misuse of the terms and reluctance to adopt updated designations have aided in a loss of distinction in what they refer to.
There is something else entirely to be said for how quickly one can progress from the disbelief of a particular diagnosis as anything beyond a punchline to descanting over the marvels of modern medicine as they relate to futher study of the mechanisms. If nothing else, it’s a great reminder of how much information is available to us on a whim.
it is, and they can take pictures of the inflamed dendrites and axons showing where they’re clogged, so I was wondering how much smaller these substructures in the brain stem are than dendrites and axons that neurons travel through, which are pretty freaking small and we’ve had pictures of for at least a couple decades now.
oh or maybe those were microscope slides and they’re saying now we can microscopically look at this stuff without having to cut into it.
It’s another one like long covid where so much of the medical community thinks it’s all in people’s heads and not real, but unlike long covid it’s less prevalent and thus studied less. We still don’t know what it is.
There’s even some hopes that figuring out long covid might lead to new ways to look into what cfs really is.
Ooo interesting. The parallels with CFS are fascinating.
I wasn’t even aware of that. chronic fatigue syndrome was actually real.
I thought I was just like side- depression.
is there anything known about CFS?
what causes it or how long it lasts or anything?
I know nothing about it except for like a comedy sketch from the 2000s at some point.
We all get tired
Much the same like we all get depressed - a normal & necessary mechanism that if it lasts for too long no longer works & causes damage.
Absolutely. I should have used an /s
It’s a line from a sketch
Oh, sorry, I really wasn’t clear & just
randomly regurgitated from my brainholewrote the thought I thought people (not you specifically) should be aware-ish of (psa, kinda, about how getting depressed is normal and healthy but that clinical depression is something else - but thats hard to explain to people not afflicted by it & using the case of fatigue + your quote seemed like a good place for it … perhaps if I started with “we all get depressed”).I wrote it after I’ve already seen your explanation (it felt like a reference anyway) - but now reading what/how tf I replied it absolutely looks like Im explaining you basic human stuff.
some of us syndromically
It’s the line from the sketch (it’s the only one I know of from the early 2000s about it). Jesus is healing people of various ailments and someone says they have ME and he responds “well, we all get tired”.
oh ahhah, it rang a bell but I couldn’t remember
Lifelong disease usually triggered by viral infections.
Known immune abnormalities which seem to affect the brain and mitochondria. I think @Neurologist@mander.xyz is specialised in it.
Also “chronic fatigue syndrome” was the name back when it was classified as psychological. Now that it’s classified as neuroimmune the name has been changed to Myalgic Encephalomyelitsis.
Couldn’t have said it better. And yes, science journalism often is basically repeating and dumbing down what a study says, but in science, and especially in medicine, a lot of studies tend to be wrong, make false assumptions, or overstate their findings, while journalists tend to take them for their word. There’s a reason you hear of a new cancer treatment in the news every other week but few actually make it past FDA approval.
wow, thank you so much for the detailed answer, I’m fascinated chronic fatigue syndrome turned out to be a neuroimmune disorder.
is ME genetic or do you just get unlucky as far as we know so far?
We don’t really know. But theres a giant GWAS (Genome Wide Association Study) called Decode ME with I think upwards of 25’000 pariticpants which is coming out in the next year. So we’ll know a whole lot more then. Hopefully it might lead to treatments.
thanks, I totally slept on those developments.
that is very exciting
Seems like it generally just gets triggered by a viral infection, but obviously it’s hard to find conclusive evidence for that as people get viral infections all the time and usually recover fine. In a way COVID was a useful ‘experiment’ where we got a lot of cases of people getting long COVID right after a confirmed infection (because everyone was getting tested, which you typically wouldn’t do for your average viral infection).
triggered or caused by?
fascinating, thank you.
that makes sense, we must have so much new data on how viruses affects humanity as a whole because of the global testing going on so long for so many people.
I mean, it’s probably some sort of autoimmune thing, where the infection causes the immune system to go haywire and attacks your own body.
That’s so cool of immune systems, to sometimes do that.
Probably triggered. But we don’t really know.
what an exciting development we still have to look forward to.
Hopefully it’s something immunomodulators can fix. Fingers crossed.
Yeah. Atleast 50% report an onset right after a viral infection. And it’s not impossible to assume the other 50% were caused by viral infections too but the patient didn’t make the connection. Obviously we don’t really know yet.
Yeah, would be hard to prove unless people started routinely testing themselves for a broad array of viruses every time they fall ill.
But hopefully with the influx of long COVID patients more research will be done, and people with CFS, fibromyalgia and similar diseases will at least be believed, because all of those are typically dismissed because you can’t really see it.
CFS is a syndrome rather than a disease because, until recently, it only presented as symptoms instead of as an identifiable problem with a person. I know that a some people who get diagnosed for CFS get later diagnoses as neurological disorders like multiple sclerosis.
It sounds like the more powerful MRI scanners are seeing inflammation in the rest of those suffering from CFS.
That would mean CFS is a lifelong degenerative condition.
Hey I’m a researcher who works on ME (in the past called CFS).
ME/CFS is currently classified as a disease/biological illness according to the CDC.
ME is a disease state in itself. We don’t know much about it, but it can’t be explained by other diagnoses, as the defining factor, neuro-immune abnormalities including immune activation showing up post exertion is unique to it. You’re completely right that we don’t yet have a reliable biomarker. We have a test that differentiates from healthy controls, but it was discontinued for ethical reasons because conducting the test leads to a sometimes permanent worsening of the illness.
In the past it’s been mixed up and jumbled a lot, but the picture is getting clearer.
There have been a few case reports of degenerative forms of the illness. But in general it takes a more classical relapsing remitting pattern. Although even in less bad stages some patients are severely functionally disabled, even bedridden and tubefed. It has a really wide range of severities with the least severely affected able to work part time and walk and travel, while the most severe might not even be able to communicate.
I have a friend who’s now living with ME. Any resources for the general public to better understand the condition?
This Podcast Will Kill You EP 137: ME/CFS did a great episode. They also have their sources so if you need a deeper dive you can read the articles.
For you to help your friend. Or for your friend themselves?
For me to be a better friend by better understanding his new limitations…
He already has a good support network, they organised a fundraiser to get him an electric wheelchair, which is awesome! But at first I didn’t understand why it was helping him, because I don’t know enough about the condition. 🫣
This channel has a bunch of short (5 mins long videos) about ME to educate people.
There’s also a slightly outdated (but still worth the watch) oscar nominated documentary about it, which has been made free and put on youtube recently It’s Unrest by Jennifer Brea
One of my patients also runs this excellent website with a bunch of resources about the disease.
Nice! Thank you so much!
Hey I’d really love to go into a short (although not necessarily immediate) exchange with you. I have MS diagnosed, recently died (not kidding) possibly due to PROMM and also yet another neurological skin disease and am wondering if my head should maybe be scanned differently now in this context.
I’m sorry I really shouldn’t be giving medical advice. It’s been a long time since I studied neurology. I’ve spent the past decade only on post viral diseases like ME.
But please please find yourself a doctor that listens and cares if that is possible. Because it clearly sounds like you need tests and you need a doc thats available for you. Maybe join some local MS support groups and ask if anyone has docs that do a really good job and try from there.
I’ll tell you this as a doctor. I would stay the hell away from some of my colleagues. Not every doctor is anywhere near good at their jobs. Some don’t care, some barely passed and don’t want to learn anything new, some like to always assume their patients have psychological problems. Find yourself a good doctor who is proactive and cares, and everything will be so much easier. Sending you good luck.
It looks like the state of the art has advanced since the last time I was exposed to it. Thanks for the clarification.
this is the extent of what I knew about CFS, I never heard of ME, I thought CFE was still a collection of symptoms that didn’t even indicate a single underlying syndrome.
I like the progress, clearly seeing brain stem inflammation sounds like comic book talk from 20 years ago.
they’re going to see inflamed dendrites next.
oh but isn’t clogged dendrites how they identify multiple sclerosis already?
clearly I have to read more about this. catch up a bit.
thanks for the explanation.
A collection of symptoms is a syndrome. Once there is a known definite cause, reclassification as a disease can take place. Lay misuse of the terms and reluctance to adopt updated designations have aided in a loss of distinction in what they refer to.
There is something else entirely to be said for how quickly one can progress from the disbelief of a particular diagnosis as anything beyond a punchline to descanting over the marvels of modern medicine as they relate to futher study of the mechanisms. If nothing else, it’s a great reminder of how much information is available to us on a whim.
My understanding is that MS is usually defined by the deterioration of the myelin sheath in brain cells which can be detected through MRI’s.
it is, and they can take pictures of the inflamed dendrites and axons showing where they’re clogged, so I was wondering how much smaller these substructures in the brain stem are than dendrites and axons that neurons travel through, which are pretty freaking small and we’ve had pictures of for at least a couple decades now.
oh or maybe those were microscope slides and they’re saying now we can microscopically look at this stuff without having to cut into it.
What’s CFS?
Chronic fatigue syndrome.
It’s another one like long covid where so much of the medical community thinks it’s all in people’s heads and not real, but unlike long covid it’s less prevalent and thus studied less. We still don’t know what it is.
There’s even some hopes that figuring out long covid might lead to new ways to look into what cfs really is.