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.

[–] Varyk@sh.itjust.works 3 points 1 month ago

thanks, I totally slept on those developments.

that is very exciting

[–] jonne@infosec.pub 8 points 1 month ago (2 children)

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).

[–] FundMECFSResearch@lemmy.blahaj.zone 6 points 1 month ago (1 children)

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.

[–] jonne@infosec.pub 2 points 1 month ago

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.

[–] Varyk@sh.itjust.works 2 points 1 month ago (2 children)

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.

[–] Neurologist@mander.xyz 4 points 1 month ago (1 children)

Probably triggered. But we don’t really know.

[–] Varyk@sh.itjust.works 1 points 1 month ago (1 children)

what an exciting development we still have to look forward to.

[–] Neurologist@mander.xyz 4 points 1 month ago* (last edited 1 month ago)

Hopefully it’s something immunomodulators can fix. Fingers crossed.

[–] jonne@infosec.pub 1 points 1 month ago (1 children)

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.

[–] Varyk@sh.itjust.works -1 points 1 month ago

That's so cool of immune systems, to sometimes do that.