The Patient Centered Care Advocacy Group (PCC Group) says it has documented a deliberate misinformation campaign by Infectious Diseases Society of America (IDSA) panelists who are tasked with updating IDSA’s guidelines for the diagnosis and treatment of Lyme disease.

Erythema migrans/James Gathany

The PCC Group cites the article IDSA Lyme Guidelines Panelists Engage in Coordinated Propaganda Campaign, by Bruce Fries of the Mayday Project Lyme patient advocacy group. The article claims to provide detailed evidence about an organized propaganda campaign by the IDSA Ad Hoc International Lyme Disease Group. According to an analysis of CDC emails obtained via a FOIA request by science writer Kris Newby, the Ad Hoc group has been covertly setting government policy on Lyme disease and misinforming the public about the disease for the past decade.

Fries noted, “Rather than advancing scientific knowledge and making information available that could help patients restore their health, IDSA panelists suppress good science and withhold relevant information from patients, colleagues, and the public.”

Since they were first published in 2000, the IDSA guidelines for Lyme disease have been the subject of intense controversy, including an antitrust investigation by the state of Connecticut and hundreds of protests.

Debate focuses on the existence of chronic Lyme disease, also referred to as “persistent infection,” meaning some Lyme bacteria tolerate and survive antibiotic treatment.

The view enforced by IDSA is that Lyme disease is easy to diagnose and simple to treat with a limited course of antibiotics. According to the IDSA guidelines, chronic Lyme does not exist and long-term antibiotic treatment is not warranted. Many physicians adhere to the IDSA guidelines and insurance companies use the guidelines to set coverage limits.

The International Lyme and Associated Diseases Society (ILADS) maintains Lyme disease is a serious national medical problem of epidemic proportion. The ILADS guidelines recognize chronic Lyme and recommend that the “duration of therapy be guided by clinical response, rather than by an arbitrary treatment course.”

Hundreds of peer-reviewed articles now support the ILADS position. These articles document many ways that Lyme bacteria can evade the immune system and survive antibiotic treatment.

According to Fries, “Hundreds of thousands of chronically ill patients are harmed by the dissemination of propaganda and suppression of relevant science, which, regardless of intent, amounts to scientific fraud.”

Patients and advocates will make their voices heard during a multi-day protest and candlelight vigil October 9 – 10 at IDSA’s IDWeek conference in San Diego, California