They fear you might turn into a burden. It's true you make new friends among others with CFS, but you need and treasure your old friends. They represent your well self, and unless you decide to take a total nose-dive into illness, they're vital to you. But with the absence of a paycheck or a reduced one, the general inadequacy of disability income, and the ultimate erosion of savings, you can't afford this solution. The AIDS people have found ways to allow PWAs to remain in their own homes.
Healthy volunteers help attend to some of their needs.
This might be possible for us. But our situations are not comparable. Unlike us, many AIDS networks arose because of AIDS' association with the gay community. Even those who are HIV positive can feel fine and have been essential to this support. This difference contributes to the difficulty in forming organized support networks.