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On April 22nd, the IDSA guidelines review hearing panel rubber-stamped its Lyme disease guidelines in its final report of the hearing. Those of us who presented and attended the hearing were appalled. Sure we had our reservations about the ability of a panel stacked with IDSA members to impartially review the guidelines, but there were 1,600 pages of peer reviewed evidence that had been presented to the panel and independent scientists had attested to the persistence of the Lyme bacteria and the low quality of the tests. How could they ignore the weight of such evidence? How could they decide to leave the guidelines completely unchanged even though a panel of their own choosing was divided on the testing? To make matters worse, the IDSA then trumpeted the results of a stacked panel as "independent" in their report. Dr. Stricker and I were given the opportunity to respond to the IDSA "spin" and our letter to the editor was just published. An excerpt follows:

On September 29th, Congressman Christopher Smith (NJ) introduced into the Congressional Record a report exposing the gaps in research in Lyme disease. The report was originally commissioned by the Institute of Medicine (IOM) from the California Lyme Disease Association, the national Lyme Disease Association, and Time for Lyme. However, the three groups pulled out of the IOM process because of a lack of transparency and the high degree of bias in the process, which undermined its integrity and could harm patients. The Congressional Record represents an opportunity to communicate key research gaps in Lyme disease in a credible venue. The report is available on line. The press release about the Research Gaps Report and the link to the Congressional Record of the report, follow. . .

I have gotten some thoughtful comments on my blog posts about the Institute of Medicine’s upcoming Lyme “state of the science” workshop. I want to share my thoughts about why CALDA pulled out of the process and why we will stay out unless there is dramatic change in the program. Whether it is best for groups to participate in a process even though it is biased is always a judgment call that depends on how biased the process is—in short whether you do more harm than good by staying in. CALDA pulled out because we represent Lyme patients and do not believe that we should legitimize a highly biased process by participating in it. We do not believe this is in the best interests of patients. Let me break this down a bit in terms of what is happening at the IOM workshop to explain why I believe it is highly biased.

Some of you have been following the IOM proceedings and know the background of the workshop. But I thought I would provide some background for those who do not know what it is, or how it came about, or why it matters. If that sounds like something you’d like to know, a backgrounder follows. . . .

I thought I might share with the community why I believe the IOM process is too one sided to further patient interests. I am disheartened by the fact that the Lyme community is facing another stacked panel (4 of 6=IDSA) and most of the speakers who have key presentations are IDSA physicians. As far as patients are concerned, the IDSA does not know how to run a clean review process. It only knows how to root for the team. The IDSA’s review panel on Lyme disease did little more than whitewash its controversial guidelines. More after the jump. . .