When you say that they represent us almost by default I think you're right! For whatever reason nobody else in the vast US landscape has tried to step forward.
I think it's inexplicable; there's a chunk of CFS patients who are either not happy with the CAA or would like another approach yet there has been no almost no action until recently.
For myself I really would like an advocacy group to step up that is more aggressive - more ACT UP-like. I think we really need that - I think we really need a kind of one-two punch; I think a group like that would make the CAA more effective, actually. I would have thought that given some of the angst out there SOMEBODY would have shown up...but the field has been ceded to the CAA. Maybe the Worldwide Patients Association (talk about representation!) will be that group - I hope so.
That's certainly not the CAA's fault! They're not keeping anyone out - they're just doing what they're doing.
Hi, Cort:
I am really in favor of a one-two punch, (repeated as many times as necessary) or a "good cop -- bad cop" approach to our advocacy efforts.
Although I have been sick for 7 years now, I didn't get diagnosed (by Dr. Bateman) until about six months ago. I've spent most of the time trying to get up to speed on the science, and there is a steep learning curve for people who are trying to understand the history and politics, as well. But I am a little suprised to not find established groups ACTing UP, big time. There certainly will never be a better time to do it.
I suggested on another thread that we really could benefit from forming a legal defense fund for people with ME/CFS. Some people/organizations do need to cultivate relationships with the legislative branch, and to protect their access to it by not breaching any professional or bureaucratic standards of decorum. They have to speak softly, but the people on the legal defense fund team should carry a big stick to back up those politely worded requests. In addition, a legal defense fund can advocate for us with the media, in a different way, and be quite a bit more blunt in conveying its message. (I was afraid somebody would have to sue under FOIA to get the Alter paper released.)
But an organization primarily engaged in defending the civil rights of ME/CFS patient in the courts, could potentially have a big impact on public policy by winning a single case. (And even losing cases can generate valuable publicity.) I am sure it's very expensive starting a legal defense fund, but I am equally sure we are going to need such an organization, especially those of us who will be considered contagious. (It is also true that under current Federal statutes, those who are not XMRV+ will still be protected by existing disability legislation, and so a legal defense fund will not find itself splitting apart along " - or + for any retrovirus" lines.
Kim