« Exercise Actually Makes Chronic Fatigue Syndrome Worse» - Video by SciShow

I found a bunch of comments of people who hadn't heard of ME/CFS before this video and who think it might be what they have.

I think the links to the specific comments only work on the desktop version of the Youtube website, not the app. (I made the numbers bigger so they're easier to click.)

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18

Edit: Fixed links

 

Worth pointing them to this forum?
It just feels painful imagining them going through the same BPS gaslighting I did when I first looked up “chronic fatigue syndrome” on google. The google information pop-up is just so bad.

 

Just don't add URLs. Youtube spam filter always deletes my comments if they have links.

 

I don’t think I’m going to make a google account for this to be honest. I’d rather stay degoogled for privacy reasons.

 

If you added a comment just now, it's not showing up, probably because of the spam filter I mentioned. If you see it, it's probably shadowbanned, meaning YouTube makes it look like it's visible only to the person that posted it.

 

Not showing for me. You can check by going to the video while logged out (you can use private mode in your browser to not have to log out) and sort comments by new.

 

Apart from a few inaccuracies, videos like this still make ME/CFS mysterious and hard to grasp because there are so many things that are seemingly unrelated or incomprehensible to people who have no experience with ME/CFS. Just saying something like "ME/CFS is a disease that even a mild exercise make you sick" and then hanging other things around, it might make it more comprehensible and therefore work better for general public. To me, ME/CFS makes a perfect sense when viewed as hypersensitivity to low-grade inflammation even if that is not really what's going on with ME/CFS. ("Mild exercise makes your body think that it has flu!")

 

That makes me wish they mentioned the knowledge gap that exists in most of healthcare.

ME/CFS is perfectly logical, it’s just counterintuitive. So most people have to recalibrate their internal models of how the body and illness works.

 

Oops, fixed now, thanks!

 

I just checked on this video again and it has gotten a lot of views.

As of now YouTube shows 211K views. And there are still new comments being posted!

Here's a comment from DarkRavenFilms posted 4 days ago:

"Thank you for spreading awareness on this. I have ME/CFS as a result from covid and it’s no joke."

And here's one from lizburlingame7987 (I recognize the name, she's a long time ME/CFS advocate) posted 2 days ago:

"Thanks so much for raising awareness! I have battled ME/CFS since 1991. Never dreamed that this disease would steal my active life forever."