Thanksgiving in the Lyme world, 2023 edition
In the Lyme community, we can easily get dragged down by the many challenges that surround us and may fail to notice that there are good things happening, too.
Thanksgiving is an apt time to reflect on recent positive developments.
I’ve been toiling in the trenches of Lyme disease advocacy for more than 15 years now, and I’m more hopeful about our progress than I’ve ever been before.
(Yes, we still have a long way to go. But things are moving forward!)
Here are some of the things on LymeDisease.org’s gratitude list this year:
What the NASEM conference set in motion
The National Academies of Sciences, Engineering, and Medicine held a paradigm-shifting event in Washington DC titled Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors.
It brought together high-level health officials, prominent researchers, and knowledgeable patient advocates from around the country. Their shared goal was to find a way to work collaboratively for the benefit of “long haul” patients with such conditions as long COVID, persistent Lyme disease, ME/CFS and more.
In a sharp departure from how such research-focused events have gone in the past, the workshop highlighted patient advocates and patient-led research such as MyLymeData. Good stuff!
More than two dozen organizations have banded together to form The Infection-Associated Chronic Conditions Patient Advocacy Coalition—IACCPAC. It represents those “long haul” patients that the NASEM workshop was talking about. The coalition’s goal? Find ways to work together for everyone’s mutual benefit. Count me in!
CDC now lists Lyme as infection that can cause chronic symptoms
For years, the CDC has been loath to acknowledge that Lyme disease can turn chronic. Now, a new page on the CDC website is headlined Chronic Symptoms Following Infections with Borrelia (Lyme) at the top of the alphabetized list.
Does this solve all of our problems with the CDC regarding Lyme disease? Of course not. But, it appears to signal a softening of a long-time anti-Lyme stance by the agency. Stay tuned for further developments.
Two hard-hitting Lyme documentaries
These films are not only rallying points for Lyme patients, but they help tell our story to the public at large.
Both are available through streaming services. If you haven’t seen them yet, I highly recommend you do.
Center for Lyme Action
Center for Lyme Action is a 501c4 dedicated to growing federal funding for Lyme disease in an effort to find a cure — especially for Lyme patients with persistent, debilitating symptoms. Their efforts helped pass the Kay Hagan Tick Act, signed into law in 2019. Every year since then, CLA has helped garner increased funding for Lyme disease research in a number of areas.
This year, the organization released a comprehensive paper called The State of Lyme Disease Research in the United States. It lays out a plan for what it would take to cure Lyme disease in the next decade.
In February, you can take part in the CLA’s next Virtual Fly-in for Lyme funding—an opportunity to ask your Congressional representatives for their support. Learn more about CLA here.
MyLymeData continues to grow in size and influence
Meanwhile, the project’s reach continues to increase. It has been cited more than 100 times in peer-reviewed publications and was prominently featured at the aforementioned NASEM conference.
Furthermore, we have published seven journal articles based on studies from MyLymeData, including our most recent one about sex-based differences in Lyme disease.
If you haven’t enrolled in the program yet, I urge you to do so. Help us get to 20,000 participants!
And we’re thankful for YOU
We’re grateful for you, members and friends of LymeDisease.org. With your support, we continue our efforts to empower Lyme patients through advocacy, education and research.
We wish you all a Happy Thanksgiving and look forward to continuing to work together in the future.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide and of Finding Resilience: A Teen’s Journey Through Lyme Disease. Contact her at email@example.com.