TOUCHED BY LYME: Aug.10 deadline for IDSA comments; archive them, too
In June, the IDSA released a draft of its new Lyme disease treatment guidelines. The organization has asked for feedback from healthcare professionals as well as individuals such as “patients, care givers, patient organization members, advocates, and researchers.”
In a previous blog, I explain how the IDSA has created a difficult process for both reading the document and filing comments. (How serious are they about obtaining such feedback? Apparently, not very.)
LymeDisease.org has partnered with other Lyme advocacy organizations to scrutinize each word and line of the guidelines. The committee is still drafting our response. We’ll share those comments with the IDSA—and the public—once completed.
To submit your own comments to the IDSA, the deadline is Saturday, August 10, at 5 pm Eastern Time. I’ve heard many complaints that the submittal process is cumbersome and takes longer than you might expect. So, be sure to allow plenty of time.
Nobody actually knows whether the patient comments sent to the IDSA will ever see the light of day. Therefore, to keep an archive of all comments submitted, Jane Marke, MD, has created the website lymediseaseguidelines.org.
If your Lyme patient advocacy group wants to add its name to our submission, email me at firstname.lastname@example.org. Please provide the name of the best contact person, address, and email address for your organization.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at email@example.com.