The UK Says No to IDSA Lyme Guidelines

I am posting the written speeches of those who commented during the public comment period of the IOM. The speech below is that of Ann Lyons, Vice-President of Time for Lyme, who addressed the testing issues in Lyme disease as well as the disease definition issues related to Lyme disease. Her testimony is available as a downloadable pdf by clicking the link at the bottom of this blog post.

Talk about exaggeration. No really–at the hearing. Dr. Carol Baker asked Dr. Wormser the $200 question: Why exaggerate if the truth will do? She was talking about the use in the guidelines of words like "vast majority" when the real percentage was 65%. And her question was why not let percentages speak for themselves? If the truth is 65%–why not simply say 65%. Is it just me, or does Wormser sound irritated at the question? His response after a drill down is that he would not use the expression "vast majority" to refer to anything less than say–90%. Excuse me? Did I hear that right? 90%. Really? Ok, let's break it down for him.

What happened? The IDSA has issued its official report of the Lyme review panel. “[A] special independent Review Panel has unanimously agreed that no changes need be made to IDSA’s 2006 Lyme disease guidelines.” Let me point out three faults with this statement. First there was no “independent Review Panel”. There was a panel that was selected by the IDSA, which intentionally excluded from the panel physicians who disagreed with their assessment—all community physicians who treat chronic Lyme were excluded from the panel. Second, some changes to the recommendations were proposed by the panel. Third, the determinations were not unanimous. The most important recommendation regarding the requirement of positive serology for diagnosis actually had a 4 to 4 vote split. I will spare you the long read—28 pages of text and give you the bare bones only version. Nothing changed. They are not even sure what the fuss was about, honestly. They never expected the guidelines to change, stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which “validated” their guidelines. Seems like the IDSA fat cat ate the canary.

Last Thursday, the historic review of the IDSA 2006 Lyme guidelines was held in Washington, D.C. Eighteen people presented arguments for and against the guidelines. We don’t know how the IDSA panel will act in the face of this deluge of previously suppressed information, but we do know that we have grown enormously as a community and that the skill-sets we developed on this project will continue to have a positive effect in the future.

I want to share with you a little of the background of the action and acknowledge people who have joined in this massive undertaking over this period. Many others have contributed, and I apologize if I have overlooked anyone’s contribution to this effort.

This week I spoke on a panel before an international audience of researchers, healthcare policy makers, and physicians at the HTAi (Health Technology Assessments International) conference in Washington DC. The topic was putting the patient at the center of healthcare. Dr. Karen Facey from the University of Glasgow asked the panel two questions: 1) what would effective engagement of patients in research look like, and 2) what is the biggest barrier to patient engagement in research. Let me explain why these questions are important to patients with Lyme disease.

For those who haven’t read, the recent New York Times article, "Plenty of Guidelines, but Where's the Evidence?" by D. Sanghavi, M.D., I suggest you check it out. Sanghavi discusses the problems caused by centralized guidelines in medicine particularly when there is an evidence gap—when guidelines are based on opinion rather than a careful review of all of the evidence. And, this issue of centralization of medicine through guidelines is becoming more important as the push for national health care heats up.