Without this pressure XMRV would have been buried already, just like the first retrovirus discovered in 1991. If the internet had been more developted back then I think you would have seen much more research done, just from the pressured applied by patients. Sorry but being quiet has not worked for the past 30 years, if speaking up and forcing issues doesn't work this time at least we've stood up to be heard.
Patient advocacy is important too and I think they are very aware of us = maybe more than we think..and even more so after CFS appears on the Front page of the WSJ.