A Broadly-adopted Modern Research to Advance ME/CFS Research
April 28, 2020
My career has been spent in health care: the early years in innovative nonprofits and companies, and later as a venture capitalist, investing in new health care companies. I saw up-close that research can be slow and expensive, and that most fields of medical research depend on reliable patient registries.
So when my daughter-in-law was diagnosed with ME/CFS, after the typically terrible 2-year diagnostic (and mis-diagnosis) process, my first instinct was to seek out organizations that were dedicated to improving the diagnosis, treatment, and outcomes for people with ME, to see what I could learn and if I could be of any help.
I quickly learned that ME/CFS had not yet developed the funding streams and critical mass of researchers and discoveries it sorely needed. While I discovered a small number of highly respected researchers working in ME, and a few well-known specialists who cared for people with ME, there were only a few ME-focused non-profits, including SolveME.
I was impressed with SolveME’s leadership, and its mission of making ME widely understood, diagnosable, and treatable. I liked their strategies of engaging patients and collaborating with others to improve government and private funding, and dramatically grow the research field.
But one SolveME program stood out: development of a new Registry and BioBank. A broadly-adopted, modern registry could advance ME research; A shared registry could speed research and development for ME the way it has for other diseases: identifying people who have the disease, speeding the enrollment of the right patients for the right trials, and standardizing definitions used in research to improve the quality of the results. And modern registries include Patient Reported Outcome Measures (PROMS), to validate the impact of the disease and treatments on patients’ lives.
I became a financial supporter of SolveME’s registry project in 2016, and by 2018 I had joined SMCI’s Board of Directors.
While it’s taken a few years, I know from my experience with startups in healthcare that it’s worth the wait to get it right. The new You+ME Registry and BioBank is a more ambitious, and better resource than the one originally conceived in 2016. No important new system is perfect on Day 1, but we have a highly talented and hard-working team committed to making it as perfect as possible, and continuing to improve it with the help of the amazing community of people with ME, their tireless and loyal loved ones, and the clinicians and researchers who have dedicated their careers to making ME widely understood, diagnosable, and treatable.
I am proud to be among You + ME’s funders, and and to enroll as a healthy control.
— Barbara Lubash, SMCI Board of Directors