On March 9, 2015 the Infectious Diseases Society of America (IDSA) announced that it will update it’s Lyme Disease guidelines. The IDSA provided a 30 day window for the public to make comments.
LymeNet.org created a patient survey and made it available on March 28, 2015. This survey was for those who have had or still have Lyme Disease. There were 6,100 responders in roughly 10 days.
This survey will hopefully give Lyme sufferers a voice with the IDSA so that they can understand the desperate need for better diagnostics, testing and treatment for early Lyme as well as recognizing that Chronic Lyme Disease and other tick-borne infections are a serious problem.
The IDSA plans to review their standards and make revisions without the input of Lyme patients or the physicians who treat them. It concerns me that even doctors like Dr. Jemsek, who is a member of both the ILADS and IDSA, are not allowed to participate in this review.
As a Lyme sufferer I appreciate the many Lyme Disease advocates like LymeNet.org and the MaydayProject who are bringing awareness to the serious problems which exist with getting the needed testing and treatment. Lyme Disease and other tick borne infections have become an ignored epidemic which need immediate attention.
The Mayday Project is a nonprofit group of Lyme Disease sufferers and their families who are advocating for research and patient rights. Mayday 2015 kicks off April 29, 2015 with events through May 1st, 2015. They will be hosting a Scientific Conference as well as a two day rally in front of the IDSA Headquarters in Arlington, VA.
LymeNet.org did a fantastic job putting together the results of their survey into a beautiful format which is easy to understand. Be sure to head on over to review their IDSA Guidelines Survey Results.
Further Information:
IDSA Guidelines Revision Plan
The Mayday Project 2015 and The Mayday Project
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