Caroline, I agree totally that caa and any patient org should be located in dc or have a designated lobbyist(s) banging on doors every day on the hill. i think if you want to lead the type of letter writing or other effort you should start a new thread on it here in the advocacy sub-forum. i'd love to get your feedback here on what to do with congress: http://forums.aboutmecfs.org/showthread.php?10009-Congress i think demonstrations are a good idea exactly because pleading with cdc and nih does not work. we need to call this to the attention of the public, congress and pres thru the media. that to me is the idea of demonstrations.