this post was submitted on 17 Oct 2024
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Lifelong disease usually triggered by viral infections. Very functionally disabling.
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 (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?
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).
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.