Comprehensive summary of developing Registry with patients, caregivers and researchers
Our dedication to research that accelerates the search for causes and the development of therapies is longstanding and includes initiatives such as the You + ME Registry, Ramsay Research Awards, groundbreaking collaboration with UCLA and our partnerships with Action for M.E. and Emerge Australia.
Our You + ME Registry, a fundamental strategic initiative, is the world’s largest longitudinal ME/CFS and Long Covid database and is available to researchers around the world. With 5,500 people enrolled to date, the Registry is growing rapidly, becoming a richer resource for researchers every day.
The paper comprehensively captures how we developed the Registry–a secured database, symptom tracking app and a biobank–in collaboration with patients, caregivers and researchers to collect data using rigorous protocols that harmonize with other efforts to collect data in this field.
We recently shared results of our first You + ME Registry survey, which showed that the majority of people with ME/CFS (82%) had no change or improved Covid-19 vaccination. However, they are significantly more likely to report that their health worsened after Covid-19 vaccination than are controls. These real-world data may help people with ME/CFS and their healthcare providers make informed decisions related to their health.
In the next few weeks, we plan to report the results of our survey on Long Covid and vaccination and, in 2022, results of our study of a potential ME/CFS diagnostic, as well as the launch of You + ME | Global, You + ME | Teen and You + ME | Biobank.
Thank you for everything you do to help end the suffering of millions.
President + CEO