When the Tick-Borne Disease Working Group ceased to exist at the end of 2022, some people wanted to keep it going. Although the Lyme community didn’t get everything it wanted via the TBDWG, many of us felt progress had been made and it was a shame to shut down the process.

This year, the US Department of Health and Human Services announced that they would continue to dialogue with the patient and research communities via a series of public meetings. They call it the Tick-Borne Diseases and Associated Illnesses National Community Engagement Initiative.

(Yes, that’s a mouthful. These federal employees do like their wordy descriptors, not to mention an alphabet soup of acronyms like OASH and ASPR and CDMRP.)

I attended the first of these meetings, held June 11 in San Francisco.

Here are some of my impressions

From left, Bonnie Crater (Bay Area Lyme and Center for Lyme Action), Phyllis Bedford (LymeLight Foundation), Kathleen Steele (LCSW) and Dorothy Leland (LymeDisease.org).

One of my favorite things at events like this is the chance to connect with other Lyme advocates who care about these issues as much as I do. The four of us in the picture above have all had close relationships to people with chronic Lyme disease–and that experience strongly informs why we all do what we do.

Phyllis Bedford and I were both selected to deliver in-person public comments. You can read what I said here:

Having different Lyme reporting rules for some states makes no sense

And what Phyllis said here:

Congenital Lyme disease is under-recognized by medical professionals

There were also three people who gave comments remotely.

Much of the day’s program consisted of reports by various federal health officials such as the CDC, NIH, and Department of Defense, as well as a presentation from the California Department of Health. I hope to cover some of that material in future blogs.

Online poll

People in the room as well as those watching remotely were occasionally asked to give their opinions on various questions. Here’s the result of one of them. Interesting to note that 63% of participants named “access to care” as the most pressing need for people with tick-borne diseases. That was my number one choice as well. (But of course all of those topics are important.)

An unexpected aspect of the day were the contributions of a young man named Aaron Mayper. He was introduced as a graphic artist/note taker. He sat quietly at the side of room working on his laptop, and then displayed his creations to the audience. Here’s one of them:

The next public meeting of this series will be in Portland, Maine, in 2025.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.