The Institute of Medicine (IOM) released its Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes Workshop Report, on April 20, 2011.
In a move designed to protest the National Institutes of Health’s (NIH) use of the IOM to conduct a workshop NIH was charged with organizing, the Lyme Disease Association (LDA), Time for Lyme (TFL), and the California Lyme Disease Association (CALDA), pulled out of the IOM workshop process and did not submit their commissioned scientific paper to the IOM committee. The three groups raised strong objections to the IOM process which:
1. permitted bias on the workshop committee and lack of transparency.
2. failed to satisfy the intent or objectives as delineated in Congressional Appropriations language.
On September 29, 2010, Congressman Christopher Smith (NJ) introduced for inclusion in the Congressional Record, “The Patient Perspectives on the Research Gaps in Tick Borne Diseases,” which he stated was written by “three of the Nation’s largest Lyme disease advocacy organizations [LDA, CALDA, TFL], who represent tens of thousands of patients.”
Links are provided below to review the IOM workshop proceedings, Lyme group actions, the Congressional report and the IOM workshop report.
September 20, 2010 Lyme Disease Association Press Release- Non Compliance Causes Lyme Patient Groups to Withdraw from Scientific Meeting
September 29, 2010 Congressional Record 111th Congress Report- “The Patient Perspectives on the Research Gaps in Tick Borne Diseases”.
October 5, 2010 Lyme Disease Association Press Release- Research Gaps in Lyme Disease Exposed in the Congressional Record
April 20, 2011 IOM Workshop Report