IDSA’s Response to Facebook Postings

From LymeDisease.org.

Last week, 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 query was apparently intended for its own membership. However, the Facebook page is open to any one, and Lyme patients soon jumped on what they saw as an opportunity to send the IDSA a collective message…

On Friday, I contacted the IDSA for a response, and received the following email:

Thanks for reaching out to IDSA for comments on the recent Facebook comment campaign about Lyme disease in response to the question “What would you like to see from your society in the coming year?”  IDSA is an active, member-driven society and as such, this question was intended for the 9,000 or so IDSA member physicians, researchers and healthcare providers who are concerned about the full range of infectious diseases including drug-resistant infections, influenza, hepatitis, HIV/AIDS, tuberculosis and other life-threatening diseases….

Once it became clear that the IDSA was deleting some of the Facebook comments, a group of Lyme patients started another Facebook page, called “IDSA Question–All Comments.” On this page, they copied over comments as they were posted on the IDSA page, managing to save most of the one’s the IDSA deleted. (Though I understand that a few of them got away before they could be captured.) Read the full post at LymeDisease.org.

Previous blogs on this subject.

“With Great Power Comes Great Responsibility”

Touched by Lyme: IDSA learns what it means to “go viral” on Facebook”

IDSA Comments: Part 1-10 from WhatisLyme?

Lymepolicywonk: Idsa Guidelines Lack Evidence—Don’t Call It Evidence Based If It’s Just Your Opinion

LYMEPOLICYWONK: IDSA explains why “evidence” is not necessary for “evidence-based guidelines”

Unprecedented Antitrust Investigation into the Lyme Disease Treatment Guidelines Development Process