@ Legendrew and Gijs. The CDC has ridiculed this disease from the very beginning. I've waited 25 years for them to do serious research for this illness, and I'm still waiting. I don't expect to live another 25 years. The AIDS epidemic has shown that if patients don't take things into their own hands they're not going to see results they want. Yes, we're terribly handicapped to have to fight for our very lives, but if we don't no one else will. If we want our lives back we need to get involved in the research in every way we can.
Do you think Unger gives a shit about our illness along with the pain, isolation, destitution, and the other shit that goes with it? She gave a great lecture a year or so ago about how happy she was to move to her nice new comfy digs the CDC built. My suffering doesn't impact her day to day life, her job security, her vacations, or her government pension. If the CDC study is flawed her life goes on, and she has more job security as another study will have to be conducted. I don't think she is a mean person, BUT you and I need results, not the same bullshit that has gone on for so long.
Maybe there would be more urgency if you had known the 20 or so PWME/CFS I have personally known that have died or committed suicide, or come to the realization that a cure is probably not going to occur during your lifetime, or maybe you have and just can't respond to the situation.
All I know is that criticizing people for their efforts to change the status quo is not going to get us well.