Most "support groups" for specific medical conditions are awful. They frequently wind up being places you can't actually talk about what's effective lest you offend or hurt the feelings of the sickest and most miserable members who typically are willfully ignorant and broadcast a "Why bother? It won't really help anyway" attitude.

I'm not sure how to find or create a group for really discussing pro active caretaking in the face of a serious medical condition. There seems to be no place that actually gets done. You get that kind of discussion amongst very healthy people -- weight lifters, marathon runners etc -- looking to push for extra performance. You don't get it among people who are supposed to be terribly sick and defying that expectation.