I agree that CDC's actions and inactions with respect to ME/CFS rise to the level of immoral, if not outright illegal (not dismissing the possibility that outright illegal activity could be discovered with proper investigation), conduct.
In response to "what do ME/CFS patients want?" I want a government agency division (I couldn't care less whether it's CDC, NIH, or some other division or lab or office within HHS) that consists of extremely competent scientists who come to work every day and actually strive to find a cause and a cure (I don't care what their motivations are), who collaborate with the top private researchers and clinicians in the field, an informed and proactive program leader with a plan to come up with a cause and a cure, and the federal funding to make it all happen in the shortest timeframe possible.
But I don't know what that would take in practical terms. As you say V99, the people that are employed in the CDC "CFS" program now (notwithstanding the removal of Reeves) are useless as evidenced by their recent publications, and I would think the only logical thing to want would be to have them go, and be replaced. The question is, by whom? And without the higher ups in government taking the disease seriously (under HHS's advisement) we're unlikely to get very far, because the brightest people in the world still need incentive that they are working on something important, and of course, funding.
As an end goal, I care less about bringing individual CDC workers or the whole institution to justice (though it would be satisfying) than having a properly funded, ambitious and competent federal research program. When I hear people saying they want CDC out of ME/CFS completely, I understand the thinking and feelings behind it, agree CDC has been a total failure and should be exposed for it - and also agree that no program is better than a program with a harmful agenda - but I still feel like we are entitled to a proper government research program just like people who happen to have other diseases. It can't just end with CDC getting out of the "CFS" business and only leaving ME/CFS patients with bits and pieces of different agencies working on XMRV (with "CFS" on the periphery of those studies) and the small number of existing private researchers applying for meager government and private funding.
Coming back down to the practical level again, I don't know. Some good science coming out in short order and having it speak for itself would really really help. Short of that I agree with Justin that what we may need is an effective formal investigation into CDC's malfeasance with respect to the disease, to get to the end goal of getting point across to the government that we deserve much better.
