@Starsister - I agree, it's hard. I too always try to be positive and upbeat when I talk to people but most don't want to hear what's going on anyways, and so I just stop trying. It takes too much energy dealing with non-supportive people. Actually, I tell very few people about ME/CFS (not that I run into a lot of people anyways!), because no one gets it. And I don't really tell anyone how hard it is to live with. I have one sister who does get it. She has rheumatoid arthritis but has told me many times she'd rather have RA than ME/CFS. She believes me and has imagined herself in my shoes, but that's very rare. The whole thing is rather crazy making. This board is a lifesaver because everyone here knows exactly what you are going through.
I think this is why this documentary is huge. It's starting to educate people about the reality of ME/CFS. My ex-husband actually watched it, much to my surprise. When we were together, he basically said it was all in my head. so he's changing (slowly).
I like your idea of a CFS etiquette guide!