Recently, the Accelerating Research on ME/CFS Meeting was hosted by the NIH in Bethesda, MD on April 4th and 5th, 2019. In addition to the two-day conference, the NIH also hosted a meeting on April 3rd, called Thinking the Future, which was a workshop designed for young/early career ME/CFS investigators to learn key networking and grant writing skills, and give presentations on their own ME/CFS research ideas. The overall goal of the three-day event was to bring researchers together to share their latest results, with the intention of driving the ME/CFS research field forward by identifying gaps and opportunities through presentations of newer research by experts as well as newcomers to the field.
Batmen Horne Center (BHC), our clinical core for the JAX CRC, recently held their second annual ME/CFS Expert Clinician Summit in Salt Lake City, UT. ME/CFS clinicians from all around the United States attended, hoping to grow a collaborative network of disease experts and identify ways to improve clinical care for patients suffering from ME/CFS. ME/CFS is quite common, affecting between 1 to 2.5 million Americans, yet many people with the disease remain undiagnosed or struggle to get appropriate clinical care because of harmful treatment recommendations and physicians who don’t understand ME/CFS or how to properly manage it.
The clinicians who attended the summit hope to bridge this gap in understanding by reaching consensus on clinical practices, and sharing this information on a new website so that it can reach clinicians everywhere. It is especially important to reach clinicians who are just beginning to develop expertise in treating ME/CFS, as many of the current specialists are nearing retirement age, and new clinicians are needed in the field. This effort is being led by advocate Mary Dimmock and Dr. Lucinda Bateman, who says that, “it was an honor to meet again with the ME/CFS experts to share knowledge, collaborate and seek consensus regarding our core messages and aspects of this illness. Our individual goals are varied, but we learn from each other, and hope to weave the common threads together into strong advice for clinicians, and forward progress toward much needed treatment trials.”