Guideline revision. What do patients want? With Lorraine Johnson, CEO LymeDisease.org

The IDSA has just announced that it is revising its guidelines. Its process excludes patients with Lyme disease, physicians who treat them, and even researchers who do not adhere to the IDSA viewpoint that Lyme disease is “hard to catch and easy to diagnose and cure”. LymeDisease.org launched a patient survey on what patients who have Lyme disease value and find important. Over 6,000 patients responded in one month. LDo also filed comments with the LDA on behalf of over 90 patient groups. Lorraine discusses the guideline revision process and how it differs from the process for developing guidelines by ILADS last year.