2025 Research Chart Book Released
This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary. To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary…
Clinician Barriers to Providing Care: Why Patients Can’t Get the Care They Need
We are pleased to present the Clinician Barriers to Providing Care Chartbook summarizing key points from the published study. Download the chartbook to learn more…
COVID Vaccination Side Effects – Lyme patients similar to general population
About a third of Lyme patients participating in MyLymeData’s COVID-19 Vaccine Survey said they have been vaccinated. MyLymeData participants reported slighter lower rates of COVID…
Why We need Patient-Partnered Research
Lorraine Johnson, CEO of LymeDisease.org presentation about what we need to do as a community to accelerate the pace of Lyme disease research and why…
How much does the CDC undercount Lyme cases? It depends on where you live.
The Centers for Diseases Control and Prevention recently compared its annual surveillance Lyme numbers [those that meet the agency’s narrowly defined case definition] to the…
We Need to Embrace All Forms of Evidence to Accelerate the Pace of Research in Lyme Disease
Research Disadvantaged Diseases Create Research Engines Using Patient Registries Chronic Lyme disease is a research disadvantaged disease. Compared to other diseases very little clinical research…
Are antibiotics useful for treating chronic Lyme disease patients? MyLymeData study provides some answers.
One of the questions we have sought to answer through our MyLymeData patient registry: Why do some people improve substantially with antibiotic treatment, while others…
COVID-19 Impact on Lyme Patients: Survey Results through September 10, 2020
COVID-19 has disrupted life throughout the world for half a year now. In May, MyLymeData launched our COVID-19 Impact Survey to learn how the pandemic…
Lyme Disease Prevalence: Does Sex Matter?
Earlier this year, MyLymeData kicked off an on-going gender bias study with Dr. Ray Stricker presenting on the topic. I introduced his talk, focusing on…
MyLymeData: My Data, My Trust
LymeDisease.org was founded 30 years ago as a non-profit grassroots organization grounded in the principles of patient empowerment, participation, and self-determination. Our patient registry project,…
2019 MyLymeData Chart Book released
We are pleased to present the 2019 Chart Book for the MyLymeData patient registry. MyLymeData has enrolled over 12,000 participants and is currently among the…
Lyme Disease Stigma and Privacy Survey Results
MyLymeData surveyed patients on topic of privacy – The results showed that Lyme disease patients face disrespect and discrimination both within and outside the healthcare…