I have very severe me/cfs. There is something I wish I had known as a newly diagnosed moderate patient (years of mild undiagnosed disease before that). One would think it is very obvious, but it is not for too many newly diagnosed pwME: NEVER OVEREXERT, for nothing and nobody. /1

Not one single MD I have met, not the ones specialized in me/cfs and obviously non of the other specialists even remotely stressed how insanely important that is. It is the one factor that you can influence and it is mostly completely underappreciated. /2

There is not really any other disease like that, imagine you could stop or just mildly modulate the progression of Parkinsons. Having even moderate me/cfs feels like being trapped in hell, I know that, but your job is to make yourself comfortable in it for the time being. /3

If you have PEM, have mild or moderate me/cfs and had a somewhat decent workup to exclude other diseases, if you can, and this might be controversial, please stay home and do not overexert to go to any specialized me/cfs clinic, I have been everywhere, it is not worth it. /4

The best thing at this point is to get and find a general practioner you trust, if you can, do your research and try as much as you can to get better at home, without ever overexerting in the process, it is very likely that you will fail, stop hating yourself for it. /5

My story is not yours, it is not, do what you feel is right for you, but: If some pwME does get better by a lot, they are not the norm, they are not the average me/cfs patient. Don’t forget that, do not let it drive you in overexertion. Lets try to fully cherish what you have. /6

It can get much better or much worse and it is much more out of your hand than you and me could wish for. Whatever you do stay in your limits, find your peace with it asap and go from there. #mecfs /7