TOUCHED BY LYME: Serving up IDSA Facebook comments to Congress

On January 4, 2012, the Infectious Diseases Society of America posted the following question on its Facebook page. “What would you like to see from your society in the coming year?” The organization’s PR people intended the question for their professional membership. Instead, Lyme patients throughout the US and around the world took notice and leapt at the opportunity to speak out against the IDSA’s Lyme treatment guidelines.

Now, a group of patients has compiled 2350 of the postings into a document they’ve entitled “The Devastation of Lives and Lies: Those with Lyme disease and related chronic infections respond to the Infectious Diseases Society of America’s request for comments,” which they are distributing to Congress and other officials.

In its introductory statement, their report says:

Within days we had posted over 1,000 comments, though many of us had our posts taken down by the IDSA and are now blocked from posting on its wall. Word of this unique opportunity traveled swiftly, and went viral within the Lyme disease community globally, within the first week of posting.

How? Since we saw many of our posts being removed, we set up a parallel Facebook wall to copy everyone’s posts onto, and we monitored the IDSA’s wall daily for several weeks, 24/7, in shifts. We then gathered up as many comments as we could to form this document (which contains very minimal editing), took up a collection for printing, and we are now bringing it directly to you.

Why? Because we need answers, we need the truth, and we need to have our lives and dignity restored. Too many lives have been devastated. Too many have needlessly died. The despair in this document is palpable. Please help us.

Click here to read the document in its entirety.

This project resulted from the combined efforts of Bambi Albert, Alan Burdge, Joy Burdge, Timothy Grey, Tammy Hildebrand, Lisa Hilton, JWJ, Todd Meese, Nina Moore, Lucretia Perilli, Kathryn Richards, Beth Erin Warnick, and Jessica Wheeler. I salute them for a job well done.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.