All graphics used with permission from Alison of http://lymestats.org/.
The National Guidelines Clearinghouse–a federal database that provides treatment information to health care professionals and insurance companies–has removed the IDSA Lyme disease treatment guidelines from its website recently. This means that the only Lyme disease guidelines listed on the NGC are those of ILADS, which were posted in 2014.
Last year the NGC revised its criteria for listing guidelines to conform to some of the standards adopted by the Institute of Medicine in 2011 for creating trustworthy guidelines. These standards included using a rigorous evidence review system. The ILADS guidelines, which were authored by Lorraine Johnson (LymeDisease.org), Dan Cameron (ILADS), and Betty Maloney, conformed to the high evidentiary standards of the IOM.
Because the IDSA guidelines did not comply with the more stringent requirements, they were removed from the NGC.
The IDSA guidelines are currently undergoing revision. LymeDisease.org and the Lyme Disease Association led an effort to gather comments from close to 90 groups protesting the process—which among other things—did not include a Lyme patient as required by the Institute of Medicine.
LymeDisease.org launched a patient survey called for comments on the IDSA guidelines on March 27 and filed comments from over 6,100 patients in less than a month. After the protest regarding the failure to include a Lyme patient on the panel, in response to pressure by U.S. congressmen, the IDSA suggested that it might reconsider putting a Lyme patient on the panel. We do not know the revision schedule for the IDSA guidelines.
Kudos to the good people working hard for us. I’d like to think of this as a boycott of the horrifically outdated IDSA guidelines for tick borne illnesses. Keep your chins up, folks, it’s getting good.