Research tends to neglect ME/CFS and FM – until right now.
Precision medicine is the emerging scientific idea that medical treatment can and should be maximally efficient by tailoring medicine and healthcare to individual circumstances. Current research studies, however, do not have the size and diversity necessary to produce enough statistical power for individualized treatments. The United States-based National Institutes of Health is aiming to overcome these research limitations through an large-scale initiative called All of Us.
All of Us launched May 6, 2018 as a campaign to gather a sufficiently large and representative population to serve as a biobank for precision medicine research on the entire spectrum of wellness and disease, from the extremely common to the exceedingly rare. It is similar to other biobanks in how it provides a medical research base, but differs by providing a deeper scope and diversity in the population. The project is powered by a guaranteed $1.5 billion dollar fund, and aims to recruit at least one million participants in the United States and track them over the course of at least ten years — an undertaking large enough to secure significant research on precision medicine.
The project lives up to the name All of Us through two guiding principles: data protection and diverse representation. First, personal medical data is protected with strong, complex safeguards that create a very high level of security. Second, to ensure a sufficiently diverse sample, the project highly prioritizes recruiting historically underrepresented populations, including people with ME/CFS and FM. All of Us representatives specifically requested that Bateman Horne Center recruit study participants in order to insure a place for ME/CFS and FM in what Health Rising called “one of the most ambitious medical projects ever attempted.” While this line of research does not guarantee a treatment for ME/CFS or FM, it does contribute in important ways to the research surrounding these diseases.
Due to the complexity of launching a project as large as All of Us, the project is experiencing anticipated delays in launching remote sites, including the Bateman Horne Center. We currently anticipate that the BHC will open as an All of Us site beginning this fall — stay tuned for more information. We invite everyone who feels safe and able to participate to enroll in the study, either individually or through the BHC once our site is operative. This will enable scientists to study these diseases more thoroughly than in past research. Participants also receive a copy of data collected, which for many participants involves records of their genomic sequencing. Be aware that participation involves long-term, flexible scheduling of appointments and surveys to gather data, and that while appointments are free to all, they do not provide medical care. Further, the project does not currently accept enrollment from people who are imprisoned, under 18, living outside the United States, or unable to consent to participation. As of now, All of Us plans to continue active enrollment for the next five years, until mid-2023.
If you are interested in joining the All of Us study, you can explore the official website, review information about who can participate, join All of Us today, or follow us for more information about the project.
Bateman Horne Center envisions a world where patients with ME/CFS and Fibromyalgia are readily diagnosed, effectively treated, and widely met with empathy and understanding.
We are relentless in our dedication to all those who suffer from these illnesses, consider supporting BHC today.