In partnership with you, we are moving the Lyme needle forward
By Phyllis Mervine
Thirty years ago, when I started this organization, I never dreamed we would still be fighting the same battles three decades later. Accurate tests, physician education, and patient access to proper medical care are still at the forefront of what LymeDisease.org works for every day.
True power comes from having informed patients involved at all levels of decision making. This includes legislation, healthcare policy, and even science. As the largest communications hub in Lyme disease, LymeDisease.org keeps patients informed and provides them with the tools they need to advocate for science-based policy change. There is strength in numbers, and we believe that with your support, we can change lives.
2019 a watershed year
2019 has been a watershed year. Many patients, advocacy groups, and government representatives have worked together to improve the lives of patients around the world. We thank everyone who supported the many initiatives LymeDisease.org put forth in the past year. We are stronger because of you.
The MyLymeData patient registry has enrolled over 12,000 patients. It’s one of the largest patient-driven registries in the nation and the largest study of persistent Lyme ever conducted. We collaborate with academic researchers from the University of Washington and UCLA. (The National Science Foundation has awarded our UCLA partners a grant to pursue their research with data from the registry using artificial intelligence.) We also collaborate with the National Disease Research Interchange and with the Lyme Disease Biobank on a tissue specimen biorepository.
Last year, we published our first peer-reviewed study using registry data. It showed the wide variation in individual patient treatment response. This is why patients need medical care tailored to their personal situation—not “one size fits all” treatment. It’s our third peer-reviewed publication using patient-generated data. We have also just released the MyLymeData 2019 Chart Book, highlighting results from Phase 1 of the study. You can download it on our website.
We are the most trusted source of news in the Lyme disease community. Patients rely on us to provide timely, accurate news and commentary through our website, blogs, and newsletters. Our journal, the Lyme Times is now in its 30th year. It can be read online or downloaded as a pdf. Our symptom checker has been used over 2.35 million times. Tens of thousands of people have used our physician directory to locate Lyme-literate practitioners.
Holding the IDSA accountable
We bring the community together to hold the Infectious Diseases Society of America accountable. This year, the IDSA proposed new Lyme guidelines, which will make it even harder for patients to be appropriately diagnosed and treated. When the draft document was released for comment, LymeDisease.org joined forces with the International Lyme and Associated Diseases Society to craft a response.
The result was over 50 pages of comments detailing scientific flaws and the ways these guidelines will further harm patients. 87 patient and physician groups from 12 countries have signed on to the Ad Hoc Patient and Physician Coalition’s rejection of the proposed guidelines. Endorsing organizations include the national Lyme Disease Association and the Bay Area Lyme Disease Foundation.
Working for Lyme disease policy change
We engage healthcare policymakers to create policy change. The federal Tick-Borne Disease Working Group has the power to spur public policy change through its recommendations to Congress. The Working Group’s subcommittees are a vital part of its process. Three representatives of Lyme disease.org served on subcommittees in 2017-18, and two are serving this year.
However, the Working Group itself has only one patient representative and no physicians from ILADS. We brought the community together to sound the alarm about the severe lack of balance on this year’s panel. 57 patient groups signed on to LymeDisease.org’s extensive letter to the Department of Health and Human Services (HHS), which oversees the working group. Furthermore, at each public meeting of the Working Group, we have submitted written comments and delivered verbal remarks to protect the patient interest.
Amplifying the Lyme community’s voice
Together, we amplify the community’s concerns. When HHS selected Dr. Eugene Shapiro to sit on the Working Group, we launched a petition calling for his removal. He has severe financial conflicts of interest and notorious disrespect for Lyme patients. Over 37,000 people have signed our Change.org petition to remove Shapiro from the Working Group.
Thank you for standing with us over the years. Whether you have Lyme disease or love someone who does, you understand our passion to improve the lives of patients. We won’t stop until every patient is promptly diagnosed and receives appropriate care.
We can only do this with your help. Please continue to stand with us. Be a part of a community that cares. Help us continue our advocacy, education and research efforts on behalf of Lyme patients everywhere who deserve to regain their health.
Your gifts make all this work possible. Please donate today. Thank you very much.
Phyllis Mervine is Founder and President of LymeDisease.org. She can be reached at firstname.lastname@example.org.