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I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Helene Jorgensen, the author of “Sick and Tired: How America’s Health Care System Fails Its Patients”. Helene Jorgensen presented her own encounter with Lyme disease and addressed the flaws in the clinical treatment flaws to date. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Ann Lyons, Vice-President of Time for Lyme, who addressed the testing issues in Lyme disease as well as the disease definition issues related to Lyme disease. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Diane Blanchard, Co-President of Time for Lyme, who addressed the issue of scientific bias and the importance of separating fact from opinion. She also emphasized that it was important to listen to patients drawing the parallel to the discovery of Lyme by Polly Murphy, a mother in a local community. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Pat Smith, President of the national Lyme Disease Association, who addressed process issues with the IOM hearing and raised concerns regarding the lack of transparency of the process and the need for a greater opportunity for patients and other viewpoints to participate in the hearings. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

Please refer back to this site for new post on the hearings

Please refresh this to update comment. This is my live blog on the IOM Hearing.

I have summarized the public comments made at the IOM hearing today. I intend to post the statements made by those speaking to the panel that are provided to me. Those who spoke included Pat Smith of the national Lyme Disease Assn., Diane Blanchard and Ann Lyons of Time for Lyme, Gregg Skall of National Capital, Helene Jargensen, author of Sick and Tired, Candy Brassard of the EPA, Rick Smith, Bob Smith, and Julia Rice, a former nurse. Others listed to speak who did not attend were Arthur Weinstein, Phil Baker, and Lynn Shepler.

The Connecticut Attorney General is reviewing the IDSA report to determine whether the IDSA has complied with the terms of the antitrust Settlement Agreement. Attorney General Richard Blumenthal's initial review of IDSA voting procedures on the guideline recommendations found the IDSA violated the agreement by rigging the vote to favor no change in the guidelines. We have been informed that both Washington State Attorney General and the Attorney General in Pennsylvania have sent letters to the IDSA requesting that they comply with the Settlement Agreement voting procedures. In addition, US Legislator Chris Smith and US Senator Chris Dodd also wrote the IDSA expressing "deep concern" regarding the IDSA voting procedures. Faced with this scrutiny, the IDSA recast its vote on all recommendations to comply with the agreement–with a major exception. They refused to redo the vote on the one recommendation that required that diagnosis of Lyme could only be made if there is a positive blood test. This vote is critical because even under the initial flawed voting procedure the vote split 4 to 4 which means there was no consensus on the requirement that diagnosis be confirmed by positive lab tests. The Attorney General is currently reviewing the IDSA report to determine whether the IDSA has complied with the Settlement Agreement. The press release of the CT AG is set forth below. I encourage those concerned to contact the CT AG Office and let them know that you want the vote redone on the major issue of lab test confirmation for diagnosis. Details follow.

What happened? The IDSA has issued its official report of the Lyme review panel. “[A] special independent Review Panel has unanimously agreed that no changes need be made to IDSA’s 2006 Lyme disease guidelines.” Let me point out three faults with this statement. First there was no “independent Review Panel”. There was a panel that was selected by the IDSA, which intentionally excluded from the panel physicians who disagreed with their assessment—all community physicians who treat chronic Lyme were excluded from the panel. Second, some changes to the recommendations were proposed by the panel. Third, the determinations were not unanimous. The most important recommendation regarding the requirement of positive serology for diagnosis actually had a 4 to 4 vote split. I will spare you the long read—28 pages of text and give you the bare bones only version. Nothing changed. They are not even sure what the fuss was about, honestly. They never expected the guidelines to change, stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which “validated” their guidelines. Seems like the IDSA fat cat ate the canary.