Interesting post! I like the Danish study very much. I wonder sometimes how much more bearable ME/CFS would be if we had support and belief and respect from the medical profession, a willingness to work with and validate us, even if they can't do much; if we had needed emotional and social support - e.g., I'm sort of lucky, I can drive, get to the store, though I have to plan days in advance, and often pay for days afterwards. So most of my energy is devoted to meeting basic needs of food and a halfway sanitary place to live (cannot keep my home clean) and laundry every couple of weeks. Is this living? I rarely have leftover energy for anything else that might be fun or interesting. I read a LOT, don't watch much TV. Oh and I go to the library when I can manage, but again have to plan very carefully.
So I wonder sometimes if I had in-home care, someone to go grocery shopping and do light cleaning, just a few very basic things, it would help so much. And if when I went to the doctor, they acknowledged what I'm dealing with - I don't know how much these things would help -- but wonder.