IDSA- Careful What You Ask on Facebook – You May Get More Than Bargained For

JobWellDoneIDSA- Careful What You Ask on Facebook – You May Get More Than You Bargained For

A group of individuals (Lyme patients), and I am not going to say Lyme victims, because they by far are not acting like victims at all, gathered together in a project to show that chronic Lyme Disease is a problem that needs to be addressed and someone needs to step in and do something.

This is in response to a comment that was placed on Facebook, January 4, 2012, by the Infectious Disease Society of America.

Their efforts resulted in a document that is in excess of 250 pages. One that was sent to White House officials including the President, Congressional members, State legislators, the CDC and some of the media:

The Devastation of Lives and Lies: Those with Lyme disease and related chronic infections respond to the Infectious Diseases Society of America’s (IDSA’s) request for comments.

“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.”

“…Who? The Infectious Diseases Society of America (IDSA) posted the following question on its

Facebook wall on January 4, 2012, at 12:04 pm (eastern):

What would you like to see from your society in the coming year?

Though the question was intended for the IDSA’s professional membership, people stricken with Lyme disease and their loved ones here in the US and abroad took notice, seeing it as one of the few opportunities that we’ve ever had to make our voices heard directly to the IDSA (and the world) regarding the outdated, inaccurate and corrupt IDSA Lyme disease Diagnostic & Treatment Guidelines.

January 4 through February 7, 2012: 2,350 Comments, 490 Shares, 389 Likes.”

If you’d like to see and read more, click on the “see compilation” below:

See compilation.

I like to thank 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.

Thank you all that were involved with this project!!!!