ha, your words could 100% be mine. Rich country, people think if I get no treatment it can't be real, no empathy (I'm told regularly that I "destroy my family", am "selfish", "should at least compromise" (the compromise being that I get better) and they are ashamed of me etc).
Great that you were able to get a diagnosis from the Charite, too (as a Swiss). Since 2017 only Berliners (+ area) are allowed to go there. No doctor so far took the time to at least read the letter with the diagnosis from the Charite and a cardiologist laughed at me and threw me out when I asked because of the POTS (that is mentioned in the Charite letter).
But you know all these stories yourself.
I'm so sorry that it's even worse in Switzerland! Is Switzerland not using the official ICD code? Do you have another code/no code?
Germany mostly doesn't use the G-code in praxis, but at least on paper, so I could argue with it when my insurance refused to pay "because being tired is not a disease" (They actually called me (several times) to ask how I could be so impertinent to not go to work when I'm just feeling tired. And that I surely could not retire on the grounds of being tired). That's so heartless, I haven't left the house for 15 month except for doctor visits, haven't seen people under 75 (am in my 30ies) in that time and regularly cry because I miss working so much (I worked (or tried to work) in my dreamjob in my most favorite NGO in Berlin, my dog was allowed to come with me (and loved it there, so many people to play with), all colleagues were my age, we had no fixed working hours and were allowed to take as many vacation days as we wanted - but it worked because everybody was so driven to create change and save lives. People rather worked more than usual and stayed until midnight and worked on weekends. It felt more like living together in the office with cooking, guitars and yoga during breaks
(not for me of course, always too sick to take part)). When I read that people with CFS are just bored and have no purpose, it's so hurtful, because I had a community and a cause I'm extremely passionate about. But I don't need to tell you any of this. Your artwork also sounds like you were lucky to be able to do your dreamjob (or a passion instead of a job) and want nothing more than to get back to it.
I'm not on twitter. Just recently found out that I don't need an account to check for news with ## like #mecfs (my favorite) or #pwme or special ## for conferences. Love your meperspective twitter account!
Liebe Grüße in die Schweiz!