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.

[–] i_love_FFT@lemmy.ml 3 points 2 months ago (2 children)

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

[–] Vex_Detrause@lemmy.ca 3 points 2 months 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.

[–] Neurologist@mander.xyz 1 points 2 months ago (1 children)

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

[–] i_love_FFT@lemmy.ml 1 points 2 months 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. 🫣

[–] Neurologist@mander.xyz 2 points 2 months ago* (last edited 2 months 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There’s also a slightly outdated (but still worth the watch) oscar nominated documentary about it, which has been made free and put on youtube recently It’s Unrest by Jennifer Brea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.

[–] i_love_FFT@lemmy.ml 1 points 2 months ago (1 children)

Nice! Thank you so much!

[–] Neurologist@mander.xyz 1 points 2 months ago (1 children)

if youve got to any, could you tell me what you think? It’s always useful to know what I should recommend to my patients to show their friends and family.

[–] i_love_FFT@lemmy.ml 1 points 2 months ago

I'm mostly a "wikipedia reader" type of person, so I don't have good pop sci sources to recommend... Sorry!

[–] Strider@lemmy.world 2 points 2 months ago* (last edited 2 months 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.

[–] Neurologist@mander.xyz 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@lemmy.world 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.

[–] HobbitFoot@thelemmy.club 2 points 2 months ago

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