You+M.E. (and me)

I didn’t know anything about ME/CFS before my cousin was diagnosed with the disease. His diagnosis followed months of increasingly severe symptoms and baffled doctors. Even after his diagnosis, there was little doctors could do to help him apart from treating the most acute symptoms of the disease. Years later, there is still no consensus treatment, but the tireless advocacy of ME/CFS patients and allies has made gains in understanding the disease despite a lack of funding and education from the medical community at large.
The You+M.E. registry has arisen from this community effort. It seeks to serve as a repository of data from ME/CFS patients and healthy controls to make it easier for interested researchers to study ME/CFS. One of the biggest barriers to studying any disease is the time and expense required to recruit and collect data from a target population. You+M.E. enables interested researchers who may not have the resources to recruit their own patients to study ME/CFS. This registry will dramatically expand the pool of intellectual capital available to research this disease.
Healthy controls are a critical part of any medical study, and the research associated with You+M.E. is no different. It’s impossible to determine what it means to be sick without knowing what it means to be healthy. Researchers can look beyond the most obvious differences between people with and without ME/CFS to discover unexpected and unknown ways in which ME/CFS impacts people’s lives. These discoveries can offer insight into both the causes of the disease and help educate medical professionals about previously undocumented symptoms.
Realizing how crucial healthy controls are for the study, I decided to participate myself. Signing up was super easy. The initial process only took a few minutes. The informed consent forms (which are often a hassle in medical studies) were thorough but not overwhelming. The other surveys were divided into bite-sized pieces, and I could save and come back at any time. It took me a little more than 15 minutes for the initial round of surveys. I’m sure it would have been more challenging for someone with ME/CFS, but from a control’s perspective most of what you’re doing is saying that you don’t have any symptoms. It’s still important to answer the questions thoughtfully, as the potential discoveries your data could yield rely on accurate information from both patients and controls.
Being a control in the You+M.E. registry is easy, and it’s one of the simplest things you can do to help people with ME/CFS. As the registry grows with more and more patients and controls, it will become an increasingly useful resource for the community and researchers studying the disease. It will help attract new researchers to the field and serve as a platform for people already studying ME/CFS to recruit from a willing pool of both healthy controls and people with ME/CFS. I’m hopeful that this effort will continue to move the needle forward toward understanding and treating ME/CFS.
— Gabe Hassler