An interesting and informative editorial was recently published in Frontiers in Pediatrics, and discusses advances in ME/CFS research and clinical care. The authors, which include Dr. Lucinda Bateman, MD, who is part of our clinical core at Bateman Horne Center for the JAX CRC, present an in-depth view of the research that is being done in the ME/CFS field, and the patient care issues that are also being addressed.
The authors delve into the history of how different groups have informed the US Department of Health and Human Services (DHHS) through the years about ME/CFS, including the Chronic Fatigue Syndrome Coordinating Committee and the Chronic Fatigue Syndrome Advisory Committee (CFSAC). However, the charter was recently not renewed for CFSAC. The editorial also discusses how there are very few ME/CFS physicians, and because there are no diagnostic tests or treatments for the disease, the physicians that do treat ME/CFS patients are forced to rely on symptoms to guide their treatment, and typically focus on attempting symptomatic relief.
Despite these obstacles, there are many researchers, clinicians, and caregivers who are working to advance the science and treatment for ME/CFS. The authors outline a monograph of recent articles in Frontiers in Pediatrics that cover a wide range of issues encountered in ME/CFS, including a brief history of the struggle for disease recognition, the need to identify a cause or trigger, which symptoms best characterize the disease, the range of current ongoing ME/CFS laboratory and clinical research, and guidance to primary care physicians in diagnosing and managing ME/CFS patients. Next, researchers and clinicians are writing articles on “ME/CFS—The Severely Affected,” which will provide a description of ME/CFS throughout the range of its severity. It has been difficult to acknowledge the challenges faced by people with severe ME/CFS, so this coming issue will address this unmet need.