I just wanted to post a bump to this thread for a particular purpose.
I've been thinking/wondering about how people with ME are doing in cultures that are not robustly represented in english language. Hoping I can express myself properly here--the more we can highlight the issues around ME in places that have no/little support the wider/better representation we have to draw on.
I had been tweeting the ME/cfs assoc site I found in Japan for example but they don't even have a twitter feed so it meant copying and pasting their address. Encouraging other assoc. may help 'put them on the map' in some small way. Or even help others to find each other to form assoc.
This link:
http://www.mikeseumarathons.eu/2019-races.html
as you can see is for the races Mike hopes to run in 2019. As he has travelled he has tried to interview someone with ME from the various places he goes to. So, these will be the places he will look for someone with ME to interview in 2019.
I'm hoping by highlighting this we might bear this in mind going forward and that we might consider ways we can encourage this to happen (if this is even possible).