I think what also helped AIDS is that people died sooner and their suffering ended. people with cfs/me dont die soon enough and their suffering is ongoing. And no diagnostic test/marker
Also the stigma of being lazy and not dieing from it is why celebs with cfs/me dont put their hand up and advocate cfs/me. Also harms their job prospects i suppose, a celebs work life 'might' be easier to manage then a non celeb as they earn the big bucks to get better treatment as well as their working not being 24/7 365 days the yr, they can push themselves for several months and rest up the rest of the year??
I can understand them not putting their hand up in a way, i know if i mentioned i had this illness to my bosses then they would send me for a medical to their doc and either have me written up as depressed or give me a poultry pay out and get rid of me. Im glad i have improved and havent had to play the cfs/me card to them, but it has come close when they have questioned my sick leave etc.
Yes, I notice that people are up for crisis care --- Let's jump in to help for AIDS or cancer and fight the good fight and there will be a win or loss. ( or at least it used to be that way. now thank goodness there is a lot of surviving on meds long term w/ both. esp. AIDS -- in thie US at least) Chronic puts things in a grey area. Most folks like things more clear cut. me too.
When I got sick, a friend of a friend was a writer in H.wood. they said "oh you have screenwriters disease"
it really went through that community in LA at the time. I was told that those in front of the camera didn't speak up b/c they wouldn't be able to get the insurance to needed to work. ( films are insured so the investment is protected. health of the players is key in that. )
glad you are able to work w/ o being hassled.
sad that society makes it so you have to hide it.