I'm sorry that I don't agree with a demonstration at the CDC. They 1) know EXACTLY what the ME/CFS community wants and have ignored it for decades. They KNOW. They DON'T CARE. 2) They are bureaucrats, which means they can't be fired. So all the protesting in the world will only make them dig their heels in deeper. Decision makers, who have something at stake are the ONLY people who can make a difference. I hate to say it but that generally means Congress or one of Obama's cabinet. The CFIDS Association should be on Capitol Hill every day meeting with Congressional staffers. As far as I can see they don't do too much of anything. So I'm suggesting targeting several members of Congress and possibly the Health and Human Services Secretary. I am suggesting that we target a letter writing campaign. Not email. Having thousands of letters dumped into the office makes a bigger impression than emails, which can be filtered into a fill and ignored. I'm proposing the letter writing campaign contain two pieces of paper or one piece with two elements. One page should be a bullet pointed, visual, fact sheet, with a demand for specific action, say better funding. The second page should be a person story of how the illness has affected your life. Who you were before and who you are now. The question is: who to target in Congress. I am open to suggestions. Generally a subcommittee chairman or a major committee chairman should be considered.
I agree totally that caa and any patient org should be located in dc or have a designated lobbyist(s) banging on doors every day on the hill.
i think if you want to lead the type of letter writing or other effort you should start a new thread on it here in the advocacy sub-forum.
i'd love to get your feedback here on what to do with congress:
i think demonstrations are a good idea exactly because pleading with cdc and nih does not work. we need to call this to the attention of the public, congress and pres thru the media. that to me is the idea of demonstrations.