The Infectious Disease Society of America (IDSA), of whom a subset are authors of the 2000 and 2006 Lyme Disease Treatment Guidelines, decided to solicit comments from their readers on Facebook at the below link:
https://www.facebook.com/IDSociety/posts/357764004239867
The question they posed was simply this:
"What would you like to see from your society in the coming year?"
And with that question, the floodgates opened, and a rush of disgruntled sick Lyme disease patients, chronic Lyme disease patients, caretakers of patients, patient advocates, physicians who were not LLMDs but were on long term treatment, and those questioning chronic Lyme disease's causes and wanting answers responded at length.
At some point, responders complained both on and off Facebook that whoever moderates the Facebook IDSA page was deleting their comments - even if the contents were not abusive, insulting, or engaging in ad hominem attacks. I don't know the full story there, having only caught a portion of the accusations about deletions.
But I will say that whether one agrees with the content in total or not: over 1500 comments in so short a period of time is notable.
What would you like to see the IDSA do in the coming year?
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