Hi, all, What I've noticed is that NIH/ some patient groups sponsored national voluntary registries for various diseases. (Google "NIH and rare diseases network" or "Alpha One Foundation" for examples.) Basically, interested people could put their contact info into a secure database that would be available to specific researchers who could contact them for various studies. No cost to participants or researchers. I thought this might be helpful for CFS because: 1) Although not a rare disease, since only 10% of us are diagnosed per CDC, we need to make ourselves known. 2) Studies of CFS are based on low numbers of subjects and since CFS may be caused by multiple reasons, having a small number of subjects results in mixed conclusions. (E.g. the CDC study "disproving" the role of HHV-6 years ago only had 26 CFS subjects )Having a larger pool of subjects to draw from could help with dividing people into subsets and individualizing future treatments. 3) Promote research in CFS. Having a readily accessible group of subjects saves researchers time and cost in recruiting subjects. For example, if more families could be identified with CFS, this would help with research into genetic causes. 4) Could result in the largest epidemiological survey of CFS if basic clinical/ demographic info is also collected. I'm taking an informal poll. If people are interested in something like this, I will pursue it further with the national CFS organization/ researchers to see if this would be something they are interested in.