been doing PT for 20 years. teach energy conservation for a living. still took me 14 months with ME/CFS to actually understand what I was telling patients. so here are the questions I see most, with the honest version instead of the textbook version.
“how do I know when to stop?”
You don’t, at first. The signal that you’re approaching your limit in ME/CFS is not the same as normal fatigue. It’s subtle - maybe slightly worse brain fog, or a weird flat feeling, or nothing at all. Most people, including me, only learn their signal by crashing past it repeatedly and working backwards.
The goal eventually is to stop at 60-70% of what you think you can do, not at the edge. “what counts as rest?”
Not lying down while watching TV. Not a conversation. Not being on your phone.
Cognitive load costs energy the same way physical load does. Real rest for most people with PEM means low stimulation, reclined or horizontal, minimal talking. Ten minutes of that is different from ten minutes of scrolling. “if I pace perfectly, will I improve?”
Honestly - unknown.
For some people yes, over months to years. For others, pacing prevents worsening but doesn’t produce improvement. I tell myself it’s buying stability while my nervous system does whatever it’s doing. It’s not a cure.
It’s harm reduction with a chance of something better. the part I didn’t expect: it takes discipline to rest when you feel okay. not when you’re already crashed. that’s the actual skill.
anyone have a reliable early warning sign they learned to catch before they crossed the line?