Dear Alice,
Thank you so much for this post.
Because really, I start doubting myself everyday.
Yes I am weak. Yes I can't even make it to the top of the stairs most times. And yes I have breathing difficulties everyday.

But still, the doctor (not neurologist) who saw me for an indication if I can have financial help, because I cant work, says: MG is a disease where your eyes get droopy. And it wil get better in a few years, and / or with simple treatment.
Neurologists I've seen, say it's not like it's a progressive disease. Or, you can hold your arms uo for almost 1 minute! Etc etc.

MG is, as far as I know, one of the only diseases (maybe the only one?) with such fluctuating symptoms. My experienxe told me that even experienced neurologist forget that sometimes. Maybe today I can hold my arms up, but yesterday I couldnt even scratch my ownnhead when it itched!

What I want to know, you say 1/3 has an illness that is disabilitating. Severe, disrupting our lifes.
Where I live (europe) they see MG as a disease thats soooo easy. On every website it days you can have a normal life with it. At least 90% has no problems whatsoever.
It makes living with it harder...because except my family who sees me day and night, no one knows how much symptoms i still have.

But what's your idea, to make a movie like CFS patients did?