"This is M.E." booklet by Action for ME - Feedback survey

I didn't even experience significant fatigue until several years into. IMO it's an optional symptom. It's a very common one, for sure, and definitely important, but it's a secondary symptom.

There's a basic vocabulary problem at play here. No one would describe having the flu as being primarily fatigued. We all call it feeling sick. There is fatigue, it is part of it, but trying to find a different word from the one that actually describes the experience is just begging to mislead. Which is exactly what happened for the past several decades.

I can definitely try to find different words to explain pain other than "it hurts". None of those words will better describe the sensations and none of them will be helpful. That we are forced to use different words from what is happening is very much a central part of how everything failed.

It's like asking to point on a blank sheet of paper where it hurts. I can definitely point at a random part of the paper if you want to, but the paper right next to it that has a silhouette of a human body will definitely be more helpful than some random location you arbitrarily forced me to choose.