I fully agree; this is our window of opportunity. And we have to get really tough. I started out by thinking it was just a case of information; everyone was saying that not much was known about this disease, and we knew that there was a wealth of good science already published. I thought that once we got the literature to the family physicians, they would "believe". But two things happened: the CDC contradicted us, and I have to admit that there is a seemingly non-rational factor. The physicians and the public just didn't want to believe. For the public, it goes directly to the name; "chronic fatigue syndrome" already had a widely-recognized meaning. It meant "lazy". And docs needed simple diagnostic information that contradicted the "lazy" moniker. Otherwise it was just a big joke, and I learned never to tell anyone I had this disease.
By historical context, I mean that the advocates today can't imagine what we went through - $800/mo long distance phone bills, running to the drug store to make hundreds of copies and send faxes, laboriously copying VCR tapes of TV shows till they were unrecognizable, sending thousands of mailings - printing, folding, stuffing, stamping, lugging it all to the post office - organizing and funding all the original conferences, fighting with the doctors to let us show them how to do public relations and how to document conferences, even how to write grants, etc.. Heck, most of todays advocates don't even know what a dial telephone is. But we did a lot of very hard work, killing and impoverishing ourselves, for nothing.
We have gotten nowhere in 25 years! We were too nice. We accepted an encouraging tidbit here and there, just like today. Our docs ran around from patient-organized conference to conference and we provided all the scientific backup documents and all the PR and arranged for all the logistics, for nothing. If the CDC and NIH contradicted us, we had nothing in the eyes of our family physicians and the public. And we still don't.
It is this historical context that explains why we have to stop thinking in terms of normal informational advocacy (my favorite stunt was mailing our pillows to congressional representatives) and start thinking in terms of war on the government, from whence cometh out funding. I never thought I'd advocate toughness, coming from a rational, scientific background, but I have to admit that nothing short of immediate action is acceptable at this point. I cringed when I heard our docs say, in the October CFSAC meeting, that they would "talk about it" in 6 months at the Spring meeting. That's 6 months of my life in which no action is taking place. I learned in 6th grade in reporting under Roberts Rules to never say "we discussed" but rather "we decided". CFSAC members should be discussing offline and coming to rather short meetings to make decisions. They didn't even follow up their own recommendations.
I've been away for 15 years and just googled around to see what was up with the CFIDS movement. I am really upset that even though there is a great new bunch of advocates out there and huge communication capability, they are still fighting the same issues. And the patients testimonies at CFSAC are identical to ours 20 years ago. Identical. Kim has sat there for every meeting for 20 years yet nothing has happened - well, one major accomplishment: getting the meetings onto the internet so that now even the sickest people can see that nothing is happening. This is war, Cort. We have got to reconfigure the CDC and NIH before anything can happen.
Accept no promises!! Accept only decisive action. And don't let them think otherwise. That's what I've learned from the history of this movement.