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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.
Lol
In general it’s terrifying, we will need to be especially kind, helpful, and understanding to patients who risk losing disability benefits and similar through cuts. I don’t know how much we’ll be able to trust federal research either. I’m not too familiar with how the NIH etc is structured so I’m not sure how much RFK and Trump will be able to change things.
In my field I’m worried about a complete federal erasure of Long COVID, banishing it without funding and expertise in a sort of semi-recognised void. Clearly the incoming government does not want to acknowledge any negatives of COVID at all, and I’m worried it will lead to much suffering.