This is what we've needed since 1988. Jeannette's name will go down in the M.E. history books!
I hope those few who have chosen to cooperate with HHS & IOM find the courage to change their positions, and side with the experts who have worked with us for a generation when many of their peers abandoned and even ridiculed us, and the very govt bureaucracy that buried us in hidden recesses of society is back at it, trying to quash another uprising, repeating history. These experts know us better than anyone, and have the authority, right, scientific evidence AND consensus to tell US govt to "Follow our lead...".
Remember or learn what happened in 1988, 1994 and 2003 when government selected non-experts devised definitions to keep us from receiving disability, research funding and even minimal health care all these years. Too many have forgotten that the govt works for US. If you told your employee to stop doing something you did not hire them to do and they did not stop, and worse, they brushed you aside and tried to take over your business, you would immediately kick them to the curb.
Too many have forgotten we have power as taxpaying, voting constituents of govt agencies whose job it is to represent and protect us. We have POWER. To cooperate with this bullying is weakness. It does not support our experts. It does not help those of us with this disease - on the contrary.
The red flags of secrecy surrounding this whole "thing" since its surprise and rapid inception shout, "STOP". Our experts shout "STOP". There should be no input other than, "STOP, we did not ask for this. We do not recognize this endeavor as legitimate, and we demand you stop doing this in our name. Our experts have stated their consensus loud and clear. If this 'study' continues against our will, we will turn our backs to it. We will face and support our experts, provide input to our proven experts, no non-expert groups foisted on us behind our backs. We will bury whatever results unauthorized groups have been paid to come up with, the same way we've been buried by govt bureaucrats for three decades."
(Anyone notice there have been no press releases by HHS or IOM glorifying this supposedly 'wonderful opportunity' for ME and CFS patients?)
BTW, we've been calling for class action for decades too. (One of the late Tom Hennessy's regular requests.) Any takers are still welcome