Today, I am honored to announce that Open Medicine Foundation and Bateman Horne Center are partnering to launch a much-needed Medical Education Resource Center for multi-system chronic complex diseases (msCCD) to increase access to knowledgeable healthcare providers.
The establishment of this center fulfills a mission that is close to my heart as a parent of an adult child with ME/CFS. In 2006, our world changed forever. Overnight, our 16-year-old daughter went from being a healthy teenager to being so severely ill she could not get out of bed. Suddenly, she no longer had the energy to do the most basic of tasks. Confused and shocked, my husband and I took her to see 20 doctors only to find there are no answers.
She eventually got a diagnosis of chronic fatigue syndrome, now known as myalgic encephalomyelitis or ME/CFS, and we were told that there are no recommended treatment options. Not one.
With all efforts exhausted, I quickly realized it was time to find the answers myself. In 2012, I registered OMF as a California 501(c)(3) nonprofit to accelerate research for multi-system chronic complex diseases (msCCD).
Since our founding in 2012, OMF has made enormous progress in fulfilling our initial mission to advance research. In the past decade, we have raised over $36M, established six global research centers across prestigious academic institutions, funded over 40 studies, and assembled a 19-member world-renowned Scientific Advisory Board. Our work thus far has been made possible through the support of many generous donors, most of which are patients and caregivers themselves.
Throughout the years, we have engaged countless patients around the globe and are committed to understanding their challenges. We know that one of the significant barriers people with ME/CFS face is a lack of proper medical care and validation. As we continue our large-scale research and fundraising efforts, we are now able to expand our focus to improving medical education for msCCD – and are thrilled to share news of the OMF Supported Medical Education Resource Center (MERC) at Bateman Horne Center.
People with ME/CFS and related msCCD have been abandoned by the medical community for too long. The MERC is an opportunity to change that. Ultimately, our goal in partnership with the Bateman Horne Center is to create a movement where we can destigmatize ME/CFS and deepen healthcare providers’ understanding of these illnesses – directly improving the lives of patients around the globe.
We are so excited for this opportunity to collaborate with Bateman Horne Center and work together to change the clinical landscape for how these diseases are treated.