I emailed the following message to the federal Tick-Borne Disease Working Group today.

To the TBDWG and staff:

As one of the foremost Lyme patient advocacy organizations in the country, we at LymeDisease.org take the question of public comments at Working Group meetings very seriously. 

Thus, we were concerned and disappointed to see how public comments were (mis)handled during the July 8 online meeting. 

At the beginning of the meeting, it was announced that 10 people had been selected to give comments. Alas, it turns out that five of those were “no shows,” cutting the opportunity for public comment in half.

Afterwards, I was able to contact three of the five people who didn’t speak. It turns out that they didn’t even know they had been selected! One said she later went back and found a notification buried in her spam file.  

For some past meetings, speaker notifications went out the previous week. This gave people time to figure out they’d been chosen and prepare remarks. 

I myself had requested to provide comments for this meeting. On Monday, July 6, I received an email saying I had not been chosen.

It showed up in my inbox with the “from” name of Jennifer Gillessen. I happen to know she’s involved with setting up Working Group meetings. But why is it assumed that anyone would recognize that sender?

Sometimes emails regarding TBDWG meetings have the “from” name of Kauffmann & Associates. Again, how is that expected to be meaningful to anybody?

An easy fix

My suggestions for the upcoming August meeting and all others going forward: 

1. Have all emails regarding the meeting carry a “from” line of “Tick-Borne Disease Working Group.” (Or, TBD Working Group, if you prefer something shorter.)

2. Notify speakers a full week before the meeting. 

3. Set up a mechanism for speakers to confirm that they know they were selected and plan to attend. (As simple as saying, “Please reply to this message and let us know you’ll participate.”) This gives an opportunity to follow up with people who miss the first notification, and/or to select alternates for those who may have changed their mind about speaking.

These steps could help ensure the public gets its full allotment of allowed comments. I sincerely hope you’ll implement them.

Best regards,

Dorothy Leland
LymeDisease.org

To my readers: If you missed it, read my assessment of the July 8 meeting here. TBD Working Group and FACA’s open meeting rules

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.