IDSA Lyme Double Speak

The Institute of Medicine (IOM) has released its long awaited report on Lyme disease. So should we celebrate or despair? I think there is room for a little of both. We should certainly celebrate the tone of the report, which characterizes the session as “a walk in the woods” to start dialogue and we should celebrate the contributions made by those who attended and participated, whether as patients, advocacy groups, researchers or physicians. I think these people did their very best to represent a side of Lyme disease that is not often given public voice. We should also recognize the contribution to a better process that was achieved by the three groups who pulled out of the hearing (CALDA, LDA, and Time for Lyme). This action resulted in Dr. Benjamin Luft of Stony Brook University being added to the agenda and may have also added to the “tone” of the report. What we should not lose sight of though, is that a civil tone and the inclusion of some patients’ testimony are not enough. This is a debate about science. Debates are about equal time, opportunities to rebut, and not excluding opposing viewpoints. That did not happen here. And, what the IOM left out or left unchallenged harms patients. Our biggest hits were in diagnosis, the exclusion of the topics chronic Lyme and treatment, and the complete exclusion of any physicians from ILADS. Let me drill down into the details.

Here's information about how to access different parts of the July 30 hearing.

I have been reviewing the IDSA transcripts and reread Dr. Arthur Weinstein’s testimony. Weinstein testified in support of the IDSA Lyme guidelines at the IDSA hearing on July 30th. He argued that chronic Lyme disease is a ‘somatic’ disorder involving a “serious amplification of symptoms” and states that he “doesn’t pretend to know the etiology (cause) of the pathophysiology”. He does though assert that the serious amplification of symptoms is associated with patients who have more psychiatric morbidity and is fostered by the labeling the disease “chronic Lyme” by advocacy groups and others that believe in a traditional medical cause for symptoms. This post is part of a twofer. Today, I ask if Weinstein is right that post treatment Lyme disease is a somatic disorder or if this is simply his pet theory. Tomorrow, I ask if the somatic disorder diagnosis provides patients with good patient care.

Yesterday, I was honored to speak at the US Department of Health and Human Services’…