As asserted in our mission statement, the Bateman Horne Center envisions a world where patients with ME/CFS and Fibromyalgia (FM) are readily diagnosed, effectively treated, and widely met with empathy and understanding. To achieve this vision, the BHC is progressing toward becoming a center of excellence for ME/CFS and FM, a process that was the focus of this month’s education meeting.
A center of excellence, as explained by Suzanne D. Vernon, PhD, “is a group that focuses specifically on a specific disease or . . . set of activities with the aim of being the best that you can possibly be in all things that affect that particular disease, in our case ME/CFS and FM.” To become a center of excellence, BHC has created and implemented a rigorous three-phase 3-5 year strategic plan, with the end goal that people with ME/CFS and FM live improved lives through universal access to evidence-informed, precision medicine.
Phase one engages our current and new patients in research. This phase formally began in 2015, and is ongoing. As of now, the BHC has enrolled 800 patients in research studies, which has furthered the research on ME/CFS and FM and has made BHC a trusted, important collaborator to many research scientists.
Phase two is also underway and aims to educate healthcare providers about ME/CFS and FM to increase access and improve clinical care to increase the number of well-defined patients who can participate in biomarker discovery and outcome measures research. The education component is key, as it allows many more people to receive an accurate diagnosis and participate in important biomarker and outcome measure research; this type of research lays a foundation of the core signs, symptoms and decrements in specific function, and measures the effect of targeted treatments. This includes cognitive and orthostatic testing, which are important diagnostic criteria that BHC is working to objectively measure. BHC will also continue to collect biological samples from our well-defined patient population and provide these to the scientists around the world working to discover biomarkers for ME/CFS and FM.
BHC’s research-ready army is 800+ people strong. Many of these people have been sick for a long time, and research on this chronically ill population has given us clues as to what has gone awry. Now BHC is working with a network of physicians to identify ME/CFS patients who have been sick for less than three years. This will help us better understand possible causes of ME/CFS, as well as ways to detect and intervene early in the course of disease. We are already seeing some intriguing differences between short and long duration ME/CFS. According to Dr. Bateman, the nuances of early-onset versus long-term patients is revealing interesting information that gives us a better chance at identifying biomarkers of ME/CFS and FM. BHC will share these new research findings by the end of the summer.
The process of educating healthcare providers and identifying biomarkers is on-track to meet our goal, and will continue through 2022.
Phase three of BHC’s path toward becoming a center of excellence is to be an expert consultation clinic and focus on targeted clinical trials for ME/CFS and FM. ME/CFS and FM are heterogeneous, which means a one-size-fits-all treatment is unlikely. This is why targeted treatment trials, which focus on specific mechanisms, will be necessary in order to individually treat people using our goal of evidence-informed, precision medicine. While the results of such clinical trials are ambitious and far from complete, they not far-fetched; such a process has taken place for other diseases, and we have the tools to make it happen for ME/CFS and FM.
Through both current and future plans, BHC is striving to provide compassion, support, and research to the ME/CFS and FM communities. If you would like to join us in that mission, we invite you to subscribe to our monthly newsletter, follow us on social media, or make a donation today.