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.

[–] Strider 2 points 2 months ago* (last edited 2 months ago) (2 children)

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.

[–] [email protected] 5 points 2 months ago* (last edited 2 months ago) (1 children)

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.

[–] Strider 1 points 2 months ago

Thank you for your answer and empathy.

Luckily I am already in good care in general and also medically treated (luckily it's in Europe otherwise I'd be broke and dead).

So regular checkups are there already. However what I miss is the deeper investigation, which might even provide data to research.

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