It’s been more than two years since we launched the You + ME Registry and we’re thrilled to have over 6,500 people contributing data to the community. We also have a new milestone to celebrate — our first peer-reviewed paper based on the Registry has just been published! The article, “The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform,” is published in the August 2022 edition of the Journal of Medical Internet Research, a publication focused on digital medicine and health and health care in the internet age.
The paper outlines the reasons we set up the Registry, the methods and surveys we’re using, and how data are collected. An underlying principle behind creating the Registry was to amplify the impact through collaboration, both with others collecting data on ME/CFS + Long Covid, and researchers who are trying to understand these illnesses. A protocol paper like this one increases transparency, builds greater awareness about the resource, and fuels future collaborations. It also allows others to replicate our data collection methods, thereby creating opportunities to share data in the future.
The You + ME Registry was designed to create a powerful dataset made up of a large, diverse group of people with ME/CFS, Long Covid, and control volunteers. Our goal was to build a resource that would inspire scientists to apply creative thinking, generate new insights, and rapidly share results. We want to use what we learn to enhance translational research, speed the development of new therapies, and increase access to care and support for everyone. We believe, now more than ever, in the potential of the Registry to help accomplish these goals.
We have already begun to see the impact the Registry has on research. Two of our Ramsay researchers are using the data to analyze patterns in symptoms and other characteristics in people with ME/CFS and long COVID. The Registry, in partnership with Hyperion Biotechnology, now serves as a resource to research a salivary biomarker for fatigue . Registry data has contributed new information to critical research questions, like whether people with joint hypermobility make up a ME/CFS disease subgroup.
So, what’s next?
We’re working on ways to enroll more participants, with a focus on expanding the diversity of the You + ME community, and opening up the Registry to adolescents. We’d like to enhance the user experience so people continue to stay engaged over the long term. We’re also looking at how we can further improve the quality and usefulness of the data for Registry participants and researchers.
But for now, we wanted to extend our thanks to you, the You + ME Community. So many people have registered and contributed their data, energy, and ideas. Thank you for all you’ve done and continue to do with us. The work isn’t done yet, and we can’t wait to keep doing research with you. If you haven’t signed up yet, please do so! And if you can encourage a control volunteer to join you, all the better.
Allison Ramiller
Kathleen Mudie
Elle Seibert
Sadie Whittaker
