LYMEPOLICYWONK: Patient Viewpoints Survey Update. 2,000 Responses! We Are On Our Way.

Over 6,100 responded to our IDSA survey within one month! That’s YOU being engaged. Everyone who has worked on this project has been deeply touched by your responses. In addition to answering our survey questions, over 1,700 patients offered their thoughts in a tiny comment box. I have to say, I was unprepared for the depth of responses offered. I know that those of us who reviewed the comments teared up. You may too.

Dr. Ben Beard of the CDC met with directors of CALDA on March 10 as part of an effort to reach out to Lyme patient groups across the nation. After meeting with CALDA, he attended the regularly scheduled meeting of the California State Lyme Disease Advisory Committee, which was created under legislation sponsored by CALDA to encourage dialogue with the California Department of Public Health. If you have not met Ben Beard before, he is both engaging and likable and has a measured tone. CALDA believes that respectful dialogue is essential to moving forward for the Lyme community, and we are pleased with this first step. We also believe that patients need to be meaningful participants in any solution for Lyme disease. We raised a number of concerns about the CDC's Lyme disease policies, including the need to treat to cure disease, the education of physicians and government funding of research. Here are the issues that loom large.

Last week, I posted a blog regarding the IDSA stealth front organization, the American Lyme Disease Foundation (ALDF). I pointed out that the organization masquerades as a patient organization or an independent source of information, but is really just the members of the IDSA Lyme guidelines panel and a couple of businessmen. I highlighted the fact that Dr. Phil Baker who was responsible for overseeing the Lyme clinical trials at the NIH prior to his retirement is now the Executive Director at the ALDF. I also raised questions about his management of two NIH trials under his watch, the Klempner trial and the Embers trial. Both trials were funded around the same time. Klempner, which concluded that chronic infection did not persist and that treatment was ineffective, was published in 2004. Embers, which found persistent infection notwithstanding treatment, was not published until almost ten years later. During the interim, the Klempner trial was relied on by the IDSA to deny patients treatment for chronic Lyme and no one mentioned that the companion study, the Embers trial, was still pending. Dr. Baker took issue with my post (see below), and I respond.