this post was submitted on 17 Oct 2024
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note: clickbait sources/headlines aren't liked generally. I've posted crap sources and later deleted or edit to improve after complaints. whoops, sry

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[–] [email protected] 27 points 22 hours ago* (last edited 22 hours ago) (3 children)

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.

[–] [email protected] 2 points 6 hours ago* (last edited 6 hours ago) (1 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] 2 points 2 hours ago* (last edited 2 hours ago)

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.

[–] [email protected] 3 points 11 hours ago (2 children)

I have a friend who's now living with ME. Any resources for the general public to better understand the condition?

[–] [email protected] 1 points 2 hours ago (1 children)

For you to help your friend. Or for your friend themselves?

[–] [email protected] 1 points 1 hour ago (1 children)

For me to be a better friend by better understanding his new limitations...

He already has a good support network, they organised a fundraiser to get him an electric wheelchair, which is awesome! But at first I didn't understand why it was helping him, because I don't know enough about the condition. 🫣

[–] [email protected] 1 points 51 minutes ago* (last edited 47 minutes ago) (1 children)

This channel has a bunch of short (5 mins long videos) about ME to educate people.

There’s also a slightly outdated (but still worth the watch) oscar nominated documentary about it, which has been made free and put on youtube recently It’s Unrest by Jennifer Brea

One of my patients also runs this excellent website with a bunch of resources about the disease.

[–] [email protected] 1 points 29 minutes ago

Nice! Thank you so much!

[–] [email protected] 3 points 7 hours ago

This Podcast Will Kill You EP 137: ME/CFS did a great episode. They also have their sources so if you need a deeper dive you can read the articles.

[–] HobbitFoot 2 points 21 hours ago

It looks like the state of the art has advanced since the last time I was exposed to it. Thanks for the clarification.