Honored Contributor (10K+ posts)
Member # 5829
August 16, 2019
Heard back from the IDSA/ACR/AAN again after submitting another request and...
1.) We are now able to cut and paste sections of the document into our responses instead of having to type each line, paragraph or section we want to comment on. Whew!
2.) We will not get any additional days to respond (other than the 30 days we originally got when I asked for more days) making the latest deadline...
September 9, 2019 at 5:00 PM.
3.) I asked who specifically would see our responses because only two panel members dealt with each question posed in their draft.
QUOTE- "While the guideline questions were divided among the panel members for the purposes of developing the draft, every member of the panel will be provided all of the feedback from the public comment phase and will update the draft if needed."
4.) They claimed to have had three patient representatives on the panel, however, nothing is listed about them anywhere, including giving them credit in the author's section of the guidelines (highly unusual).
I asked why and was told...
QUOTE- "Finally, you are correct that the panel includes three patient representatives.
We greatly value their participation but have withheld their identities out of respect for their privacy, because listing their names would disclose protected health information about the patient representatives.
We will make their identities public only at their request."
Needless to say the people in the Lyme community I've heard from already have really poo-poo'd that last part. I will follow up on that.
I am sorry we couldn't get more days to respond, but I urge all of you to do what you can to make a short comment, or ten or twenty of them. Please!
More info at link below, and the letter from them is shared too (near the bottom).