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. . .

This combined with the fact that the IOM panel is excluding ILADS physicians entirely from speaking looks to me like suppression of opposing viewpoints.  Someone with a PsyD degree who characterizes Lyme as a psychiatric malady (Afton Hassett) and has published with Dr. Lenny Sigal (whose dogmatic views are known) was selected to speak on biomarkers of the disease over people far more qualified (take Dr. Ben Luft, for instance). 

Other physicians who you would expect to be more open-minded are relegated to 10 minute slots on panels.  When you get out of the “medicine” side of the equation, things look more balanced, but it is the medicine side that is going to harm patients and without balance there, I don’t see how this process has a shot at scientific truth.  The IOM says the conference is not about treatment, but Wormser will undoubtedly talk about the 4 treatment trials and Aguero-Rosenfeld, who worked with Wormser until recently, is slotted to speak on diagnosis. 

The “product” of the hearing is a report of the proceedings.  With Wormser and Aguero-Rosenfeld viewpoints unopposed, that is the only “record” that can go into the report for treatment and diagnosis.  I do not see how that result is either credible or objective.  Or how it serves the needs of patients.  Let me know your views.

You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.