Neurologist

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There’s also a slightly outdated (but still worth the watch) oscar nominated documentary about it, which has been made free and put on youtube recently It’s Unrest by Jennifer Brea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

Well the problem is we know very little. So a movie like that would be complete guesswork.

You might enjoy the youtube channel “Stephan Milo” though. His videos are well sourced and have a lot of expert interviews. And he focuses on this kind of stuff.

Cool.

Title might be a bit clickbait though.

It’s oldest known representational art. Not oldest known art.

For example the carvings in the Blomos cave in South Africa are atleast 75’000 years old.

Edit: Thank you for editing the title! That’s pretty weird mistake by Nature I thought they had high standards. Well they have peer reviewed and approved some dodgy research in my field recently so maybe I should be more skeptical.

hmmm. To be honest, that’s an okay summary out of context, but it really fails to grasp the essence of the paper. It’s not wrong per say, but it adds irrelevant details while withholding key information. I wouldn’t rely on chatgpt’s summary for this.

There’s a feature of some Long COVID cases (~50%) which is also the defining feature of an illness called ME/CFS which has been caused by various forms of viral infections throughout history. (It is thought that a lot of Long COVID cases are ME/CFS). Anyways this feature is, Post-Exertional Malaise, a worsening of the illness after exertion beyond a certain threshold, which can entail hundreds of symptoms and be permanent.

This paper is a review of some of the biomedical studies looking at what could possibly cause this, and finds there is repeated data of Microvascular (blood vessels) and immunometabolic (metabolic markers relating to immune function) differences with healthy controls.

The leading hypotheses are that this is caused by mitochondrial dysfunction which is mediated by a dysregulated immune system.

Some of my colleagues were co-authors on this paper. I’ll forward the feedback that it is jargony.