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.

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There’s also a slightly outdated (but still worth the watch) oscar nominated documentary about it, which has been made free and put on youtube recently It’s Unrest by Jennifer Brea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

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

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

Probably triggered. But we don’t really know.

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.

Couldn’t have said it better. And yes, science journalism often is basically repeating and dumbing down what a study says, but in science, and especially in medicine, a lot of studies tend to be wrong, make false assumptions, or overstate their findings, while journalists tend to take them for their word. There’s a reason you hear of a new cancer treatment in the news every other week but few actually make it past FDA approval.