I agree with all here... even well meaning people have said "keep exercising and you will get better with time... if you don't, then, blah, blah, blah". Treating you as if you are someone who just needs to be motivated to activity, not someone who has to make the painful daily decision not to do physical activity. Also people don't understand that PEM is not some light weight thing that is worth going through... exercise, pay for a while, then right as rain... , no, PEM is damaging and and can worsen the overall condition! And people talk about 'striking a balance' when there is really no balance, just something you could do before being taken away. Exercising and getting sicker is no balance, it is the opposite of balance.
Just a rant here but, like everyone else, it really bothers me when healthy people steam roll over the issue with their own uninformed views. They've never dealt with it, they haven't researched it, they don't know what it's like, so why do they pretend to know how it is. Blah!