The Infectious Diseases Society of America plans on revising its guidelines for the treatment of Lyme disease. On March 9, IDSA released a project plan to update the guidelines. The plan provides a period for public comment, which ends April 24. The current treatment guidelines were developed in 2006 and reviewed in 2009, but without leading to any substantial change.

Mayday Project
Mayday Project

The IDSA project plan states that the review process will follow the Institute of Medicine’s (IOM) standards for trustworthy guidelines, but according to a recent article by the composition of the new panel already violates the standards. The IOM standards require guidelines panels to include representatives of key affected groups. The current panel, however, includes no Lyme patients and no independent physicians who treat them.

Josh Cutler, co-founder of The Mayday Project—a volunteer organization comprised of those touched by Lyme disease—says too many IDSA members consider patients suffering from Lyme crazy and ill informed. Cutler cited a 2011 Lancet article by leading members of the IDSA denouncing Lyme advocates as “antiscience” and holding views that “have contributed to injury and even deaths of patients.” Cutler says most injuries and deaths due to Lyme disease are a direct result of the IDSA group think leading to the ill-informed mantra: “There is no such thing as chronic Lyme.”

Cutler called on the IDSA to pay strict attention to the IOM Standard #3 as the organization’s Lyme treatment guideline panel convenes.  Standard #3, said Cutler, specifically calls for a “multidisciplinary and balanced” panel “comprising a variety of methodological experts and clinicians, and populations expected to be affected by the Clinical Practice Guidelines.”

Standard 3.2, noted Cutler, reads: “Patient and public involvement should be facilitated by including (at least at the time of clinical question formulation and draft Clinical Practice Guidelines review) a current or former patient and a patient advocate or patient/consumer organization representative in the Guideline Development Group.”

“As of today,” said Mayday’s Cutler, “the list of participants formulating the new guidelines contains no patients, patient advocates, or advocacy organizations.” Cutler called on the IDSA to remediate these glaring omissions immediately.

Mayday has scheduled a conference, protest, and vigil at IDSA headquarters from April 29 through May 1 to call for full compliance with the IOM standards and for the removal of panelists with the most serious conflicts of interest.

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