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.
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.
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.
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.
Lifelong disease usually triggered by viral infections. Very functionally disabling.
Known immune abnormalities which seem to affect the brain and mitochondria. I think @[email protected] 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 (ME) (Or ME/CFS).
As usual though for a medium quality source like ScienceAlert, the article is written by someone who has no specialisation in Long COVID/ME, or even medicine. So there’s a bit of oversimplification and overstating findings from one study in that article. Very few researchers think it’s a brain injury. Most think the immune system has been compromised (with some deficiencies and abnormalities) and it’s affecting the brain in unknown ways (hence the abnormalities found. It’s weird though because the immune system problems seem to cause some immunodeficiencies but also autoimmune reactions. They’ll need to be quite a bit more studies before we get a clear picture.
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.
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).
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.
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.
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.
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.
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.
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.
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.
Lifelong disease usually triggered by viral infections. Very functionally disabling.
Known immune abnormalities which seem to affect the brain and mitochondria. I think @[email protected] 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 (ME) (Or ME/CFS).
As usual though for a medium quality source like ScienceAlert, the article is written by someone who has no specialisation in Long COVID/ME, or even medicine. So there’s a bit of oversimplification and overstating findings from one study in that article. Very few researchers think it’s a brain injury. Most think the immune system has been compromised (with some deficiencies and abnormalities) and it’s affecting the brain in unknown ways (hence the abnormalities found. It’s weird though because the immune system problems seem to cause some immunodeficiencies but also autoimmune reactions. They’ll need to be quite a bit more studies before we get a clear picture.
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?
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).
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.
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.
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.
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.
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