I pass over long posts; I hope you will read this one, as it is the only one I'll post and offers an entirely different approach to advocacy.
Eco, I empathize with your frustration and appreciate your work. Maybe, though, the failure is the medium. I haven't seen these forums instigate thoughtful, goal directed ACTION, only talk. Lots of good words, but nothing that causes consequences to HHS or CDC. I check in every few months, and it is mostly new people each time. They talk for a while and then leave, realizing, I hope, that they have spent a lot of time but not done anything that caused a change. Only about 500 people from the US (half were from other countries) even signed the thank you petition to our docs. Devastating; the docs finally took a political stand for us and we didn't support them. Only 33 people signed the opinion poll on IOM. I think maybe it is time to realize that most of the advocates have left the room.
That's not bad, though. Declining to waste their time writing letters to unelected people is a good thing. Being discouraged by seeing the patients cancel each other's positions is a good thing, i.e. with those who know the history refusing to cooperate with the enemy while others are sending in IOM nominations as requested. The internet is democratic, with those who are supporting random acts having equal say with people who form goal-directed, targeted strategy, leading to confusion among patients seeking direction. After 25 years, we don't even know how many people are sick, let alone how many are willing to take action to advocate against the CDC CFS stance. It is time to let go of the 1 million CDC myth and look at the only numbers we have, the handful of advocates who participate on the web, which at any one time is probably far less than 50 people. Some still think this is a medical education issue rather than a pure political fight. Advocates need to stop writing long explanatory letters and start applying sharp and targeted political pressure to HHS and CDC. When CDC accepts our researchers' authority in this disease, the fight is over. That was the point of the docs' letter, not that CDC had to accept any particular definition, but that they had to accept our docs' authority.
Maybe we need to go back to the face-to-face physical support groups and conferences? With local leaders who can train and lead their flock in local political advocacy, building support for national advocacy. Without the anonymity of the internet but with personal commitment and acceptance of responsibility.
Without an astute and knowledgeable national organization, I don't see how the fragmented efforts on the internet can accomplish organized goals. Everybody is exhausting themselves by writing and reading pages and pages of discussion that leads to no coordinated action. (Like this post.) Right now we have patients on two sides of the IOM issue cancelling each other's efforts. Other discussions just go round and round. Meanwhile, HHS has just enough patients cooperating with them to claim that they have patient support, and they have proceeded with their work unphased.
If your effort does not target individuals and make the targeted person uncomfortable enough to change their behavior, then you have wasted your time. Making friends with the enemy is the best way to get shot, not to win a war. We have to find a way to train patients in effective, targeted, non-exhausting political advocacy that creates immediate consequences for individuals in HHS and CDC, and I don't see these forums as able to do that. So I think the failure is the medium, more than the patients. I applaud patients who don't want to waste their time.