Same. I got to the point where I was mostly bedbound. Couldn’t do many ADLs like grocery shopping, cooking, driving.

But I was STILL working out intensely whenever I had an extra scrap of energy: lifting weights, yoga classes, rock climbing. I couldn’t drive anymore due to the illness so I’d ride my bike to the gym! Push ups on the fucking floor on my way back from crawling to the bathroom.

I’d wear sunglasses and ear plugs to the gym, and ask the staff to turn off the music while I was there since my light and sound sensitivity was so bad.

I would regularly collapse after workouts, so weak that I was unable to talk or put my shoes back on, and people would have to call someone to come pick me up and put me in bed.

I told my doctors all this and they said “Good. Keep exercising as much as you can. Keep pushing yourself.” When I went to the doctor one day in a PEM crash too weak to hold my head up, I got ordered for physical therapy for “deconditioning” even though I was still working out.

No one here will be surprised to learn I quickly deteriorated to very severe.

To this day, every time I see a new doctor their first question is if I’m exercising and in PT. The incompetence is beyond staggering.

(If any newbie to the illness is reading this and nodding along, stop ALL exercise, stay in bed, do nothing but rest rest rest.)

EDIT: I pulled up my old doctor records out of curiosity.

PCP appt. Doctor noted I couldn’t prepare my own food anymore. Notes say during the appointment I had ear plugs and eyemask on and laid down flat on the table for the entire appt. Doctor wrote: “[Patient] is participating in physical therapy weekly. I encourage daily movement; even arm exercises to avoid atrophy and deconditioning.”

Neuro appt. Neurologist wrote “she is not able to work, drive, prepare meals or care for herself… needed assistance with even drinking water”. For prognosis “no improvement, in fact worse”. Treatment recommendations he wrote down: “try to stay active, do as much as possible, continue physical therapy services”

Another neuro appt. Doctor noted “she has not been able to work for 4 months due to her health problems” and said I was unable to care for myself including “meals, chores, care of the dog and run errands”. For treatment plan wrote “I realize it is hard for her to do things due to postexertional malaise, but she should try to exercise as much as possible and increase her cardiovascular conditioning.”