T oward the end of the Tick-Borne Diseases Working Group meeting on June 21, 2018, there was some discussion about including patient stories in panel’s upcoming report to Congress. Working Group member Robert Smith, MD, noted that most of the Lyme disease stories that had been chosen for inclusion depict people suffering and waiting years for diagnosis, failing the two-tier testing criteria, having treatment cut off, and having bad outcomes.
Smith stated that most of his Lyme patients have responded well to treatment and he felt that the report’s patient stories should reflect that reality. Working Group Chairman John Aucott then agreed that the report should be “balanced.” The question of how to include a series of horror stories while still comporting with the goal of balance remained unanswered.
Both Smith and Aucott are misreading the Working Group’s charter. Congress intended for panel members to represent diverse scientific disciplines and views. This is balance, and this is why the Working Group includes representatives from all stakeholder groups: government and non-government, patients and advocates, as well as scientists, researchers, and doctors with a range of views……. Join or login below to continue reading.
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