I think one of the worst things is that the disease isn't recognized and even from very well-meaning and supportive people, there is always the implicit suspicion that it may not be real after all or it might in fact be a psychological problem and not a "real" illness.
I think if the cause were found, if there would be a proper diagnosis based on accepted hard criteria (e.g. blood tests), if people could somehow prove that they are really sick, things would get a lot better.
First of all, all the legal stuff, disability benefits, insurance etc. But maybe almost as important would be how people look at the patient.
Let's take for comparison people can prove that they are severely ill, e.g. MS, severe Rheumatoid Arthritis etc. People look at them with the feeling "omg, how horrible to have such a disease."
With respect to CFS, it's is always like "we don't even know what (if anything) you have".
Example: My mom. She always tells me that I should discontinue all medications and supplements and just wait and it would get better. I tell her that this is super-ignorant. I have been ill for 10 years and it is steadily getting worse. I'm not going to get better by doing nothing. No one would say that to a MS or HIV or RA patient or to any patient that can prove they have a progressive chronic illness.
And I can't even blame people for looking at CFS this way. It's impossible for a healthy person to understand how a CFS patient feels and it is also very difficult to accept that someone is in fact so terrribly sick and no doctor in the world can find a cause or even any major abnormality that could explain the symptoms.
