ILADS Message to IDSA Lyme Guidelines Panel:
Do the Right Thing.

International Lyme organization criticizes IDSA review methods.

Bethesda, MD – The International Lyme and Associated Diseases Society (ILADS) has criticized the Lyme guidelines review panel of the Infectious Diseases Society of America (IDSA) for excluding patient interests and disregarding competing guidelines in its review plan.

IDSA put together a panel charged with revising its outdated 2006 Lyme guidelines. As noted by ILADS, IDSA violated the principles of quality guideline development established by the Institute of Medicine (IOM) by excluding Lyme patients from the panel. IDSA also ignored the recently published ILADS Lyme guidelines in formulating its guideline topics for panel discussion.

“Exclusion of patient interests and disregard for competing guidelines makes the IDSA review process untrustworthy,” said Dr. Daniel Cameron, President of ILADS and lead author of the ILADS guidelines. “IDSA needs to rethink its guidelines revision plan.”

Lyme disease is a tick-borne infection caused by Borrelia burgdorferi, a type of corkscrew-shaped bacteria known as a spirochete (pronounced spiro’keet). In 2013 the Centers for Disease Control and Prevention (CDC) announced that Lyme disease is much more common than previously thought, with over 300,000 new cases diagnosed each year in the United States. That makes Lyme disease almost twice as common as breast cancer and six times more common than HIV/AIDS.

ILADS published its revised Lyme guidelines in 2014 following a rigorous evidence review using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system endorsed by the IOM. The ILADS guidelines incorporate the latest evidence from peer-reviewed publications concerning diagnosis and treatment of Lyme and associated tick-borne diseases, including studies authored by IDSA members.

As part of the guidelines review process, IDSA recruited members from eleven other medical societies to give a semblance of consensus to the review. However this “me too” approach excludes the more important input of suffering Lyme patients and their providers who deal with tick-borne diseases every day.

“IDSA cannot have true consensus while ignoring the most important stakeholders ─ patients and their doctors,” said Dr. Betty Maloney, who co-authored the ILADS guidelines. “The IDSA process is fundamentally flawed.”

Dr. Raphael Stricker, a former President of ILADS, pointed to the implications for Lyme disease diagnosis and treatment raised by the IDSA review process. “Guidelines are supposed to help doctors make patients well,” he said. “The biased and exclusionary IDSA Lyme guideline revision plan promises to do the opposite.”

To read the ILADS critique of the IDSA guidelines revision process, please click here.

Daniel J. Cameron, MD, MPH