Lyme Policy Wonk: Fresh back from the conferences!
Fresh back from the Columbia/LDA conference and the ILADS conference in Washington, DC. I love going back for these conferences because I see all the people I have talked to over the year and so rarely lay eyes on. I love the energy of the conference. This year, the ILADS conference had break-out sessions on evidence-based medicine and research. These were working groups with a lot of discussion generated—the type of discussion that only occurs when people are together in the same room and real time conversation occurs sparked by ideas. This was energizing to me.
The Columbia/LDA conference had some terrific speakers. Ben Beard of the CDC was the moderator–talk about building bridges. Watching Ben and listening to the speakers was terrific. Congressman Smith came and spoke at the conference about the federal legislation (soooo important)—now this was truly inspirational. Here is a man who understands precisely what the problem is—the gap between the men who control the science and vaccine oriented research dollars and patients. What a travesty when scientific and commercial interests do not align with patient interests.
We need some organization in the assignment of patients to doctors, according to level of difficulty. Triage, but not the kind that abandons some people. This is something that ILADS and patient advocacy orgs need to put on their to-do list.
The first lyme doc I went to described himself as a second tier doc, doing cases of intermediate level of difficulty. Now I am at the most difficult level and feel abandoned. People at this stage do not have the stamina to drag themselves around the country trying to find a doctor.
Maybe it is asking too much when we are still in the midst of a big battle politically, but please consider this need when it is possible. As soon as possible.
well, if there was any “energy” at the conferences, then no one
there had active Lyme infection…since Lyme feels like mono, and
arthritis, plus, at first when you first get it, also feels like the flu.