IDSA announces presenters and order of presentation

I have gotten some thoughtful comments on my blog posts about the Institute of Medicine’s upcoming Lyme “state of the science” workshop. I want to share my thoughts about why CALDA pulled out of the process and why we will stay out unless there is dramatic change in the program. Whether it is best for groups to participate in a process even though it is biased is always a judgment call that depends on how biased the process is—in short whether you do more harm than good by staying in. CALDA pulled out because we represent Lyme patients and do not believe that we should legitimize a highly biased process by participating in it. We do not believe this is in the best interests of patients. Let me break this down a bit in terms of what is happening at the IOM workshop to explain why I believe it is highly biased.

Here's information about how to access different parts of the July 30 hearing.

Have you read the LA Times op-ed that ran on December 16 by Daniel Sarewitz and Samuel Thernstrom? The piece is called “Impure Science”. It is blazingly good. The focus is on the global warming debate and recent suggestions of bias in email exchanges from one side of that controversy that were disclosed to the press. The take-home points though apply to any area, like Lyme, where there is divided science and polemic viewpoints. While the debates are shrouded in science, the real debate is not about science, but stakeholder viewpoints. When science is subject to interpretation by different stakeholder, the question is who controls the mike?

LymeDisease.org has launched a new survey regarding the FDA’s proposed regulation of Lyme lab tests. We need your views on this very important topic. This is extremely time sensitive so please respond quickly! We will use this information to assess patient views and to inform our meetings with the FDA. Our last survey drew over 6,000 responses and was published this year. We need your input now!