#NotJustFatigue - next event livestream 25 Sep 2025

[ahimsa]

A recording of the September 25 livestream by #NotJustFatigue has been posted:

https://www.notjustfatiguelivestream.org/

(click on the link and scroll down)

I only watched the first couple of minutes, not the whole thing.

I presume that some members of US Congress (representatives or senators, not sure which) were invited to attend this livestream because Ryan Prior said, "I especially want to thank Congressional staff who carved out time to be here. Your presence sends a powerful signal that this issue matters." I'm not sure how to find out which staff members attended or how many.

 

[Grigor]

I respect anyone who tries to create something to raise awareness about ME. Personally, I can’t agree with the name Notjustfatigue. If it were called Notfatigue or something that distanced itself from the idea of fatigue, I might connect with it more. But the word just still makes it sound like it’s partly about fatigue. I simply don’t like the name. In general, I prefer to use the word exhaustion.

Their first videos featured patients explaining what ME is and how debilitating it can be. Yet everyone was sitting upright. I asked the MDs in Doctors as Patients not to present themselves in a way that looks better than how they normally feel. If they would usually talk to family members while lying down, they should do the same in the videos, even if they can sit up for a short time. The films by NJF gave the wrong impression for me.

I like the yellow colors on the website, but yes, the animations are a bit intense.

So while I admire anyone who starts a project like this, I haven’t really been able to connect with it.