LYMEPOLICYWONK: IDSA PETITION –CT RESIDENTS URGED TO SIGN, DISTRIBUTE AND DELIVER!

Having Lyme means losing your innocence, utterly, in science. It's true. I am remembering the night I explained evidence-based medicine to a friend whose daughter had Lyme. I explained that in Lyme evidence-based medicine was a “tool” for persuasion in a polemic argument. He was stunned. His daughter had Lyme. He believed in science. He had trouble, real trouble, getting his daughter diagnosed and treated. He knew the problems of Lyme from the inside out. But it hadn’t occurred to him that science wasn’t “pure” science. That researchers followed their bias, their pet theories, their commercial interests in designing and interpreting studies. It was an interesting moment with this sharp and concerned father while he tried to understand the depth of the problem in Lyme. It was a moment when innocence is utterly lost for the first time to those who know how the system of science “ought” to work.

On Monday, February 1, 2010, the Connecticut Attorney General sent a letter to the IDSA expressing “concern” over “improper voting procedures” used by the IDSA in the Lyme guidelines review voting process. The IDSA may soon approve hearing determinations based on this improper voting procedure. The Attorney General requested that the IDSA redo the vote to comply with the Settlement Agreement. The four-page Attorney General letter was released in response to a Freedom of Information Request made on behalf of patient groups for information regarding the IDSA’s compliance with the Settlement Agreement.

TFL, LDA, and CALDA, announced today that they are withdrawing from the IOM Lyme Workshop due to bias and the lack of balance in scientific viewpoints scheduled to be presented at the conference. The three groups had been commissioned to write a paper for the proceedings and Diane Blanchard of Time for Lyme had been slated to speak. Four of the six IOM panel members responsible for selecting speakers, topics and timeslots are members of IDSA, which is known to have a strong bias against the diagnosis and treatment of Lyme disease. The resulting agenda reflects this bias with key speaking positions granted to Dr. Wormser, who chaired the IDSA Lyme guidelines panel, and Dr. Aguero-Rosenfeld, who until recently worked with Dr. Wormser at NYMC. No comparable time slots were awarded to provide the opposing viewpoint, and no ILADS physicians are scheduled to speak at the conference. Details and Press Release follow. . .

A new article in Health Affairs, Evidence that Consumers are Skeptical About Evidence Based Health Care, draws an important conclusion: “Clearly, consumers will revolt if evidence-based efforts are perceived as rationing or as a way to deny them needed treatment.” Bingo! This is why patients with Lyme disease are in revolt.