Washington, DC - An independent panel convened by the National Institutes of Health concluded that ME/CFS is a complex, multifaceted disorder characterized by extreme fatigue and many other symptoms (including impairment of memory or concentration, post-exertional malaise, and pain) which can result in disability and the loss of employment and family support.

Furthermore, limited knowledge, insufficient research funding, and a lack of diagnostic tools diminish a clinician’s ability to provide optimal care. This leaves patients burdened with the difficult task of finding a health care provider who can correctly diagnose ME/CFS.

In addition to the personal and diagnostic challenges surrounding ME/CFS, the panel also noted several methodological problems with past research studies, such as small sample size, the inclusion of participants with differing symptoms across studies, and the exclusion of several key populations (e.g., children, minorities, men, rural and homebound residents). However, recent insights into the possible causes of ME/CFS (i.e., brain changes, immune imbalance, inflammation, viral infection) offer hope that the disease will eventually be understood and effective treatments will become available. The panel noted the potential for health and health care disparities and the need for diverse new voices in the field.

“We need to learn more about the cellular and molecular mechanisms of this disease and how immunologic, neurologic, and other factors contribute to ME/CFS,” said Carmen R. Green, MD, panel chair and professor of anesthesiology, obstetrics and gynecology, and health management and policy at the University of Michigan Schools of Medicine and Public Health.  “We need to fund more studies that can be easily reproduced, and we must gain a better understanding of how ME/CFS affects people and their families in terms that are clinically meaningful to them. In addition, we need to have a greater understanding of the impact of ME/CFS across the life span, especially in underserved and vulnerable populations.”

To address these knowledge gaps, the panel is calling for more research and more opportunities for new investigators to invigorate the field. The panel also recommended maintaining biological samples (e.g., serum, whole blood, RNA, DNA) in a repository to support studies on biomarker discovery. Additionally, the panel recommended providing education and training to health care providers about the diagnosis and treatment of ME/CFS.

The panel also concluded that the ME/CFS research, medical, and patient communities must establish a standard case definition in order to better understand the disease and to accelerate the development of new diagnostic and prognostic tools. To promote advances in ME/CFS treatment, the panel recommended creating a network of collaborative, multidisciplinary centers and developing public-private partnerships to help fund and advance research.

“ME/CFS exists, and despite the absence of a clear definition, an estimated one million Americans are affected by it,” said Dr. Green. “In order to develop primary prevention strategies and effective drug treatments, there needs to be a clear understanding of its causes and the populations it affects.”

The panel will hold a press telebriefing on Tuesday, June 16, at 11:00 a.m. ET to discuss its findings with members of the media. To participate, call 888-428-7458 (toll-free in the United States and Canada) or 862-255-5400 (toll for other international callers) and reference the NIH Pathways to Prevention program on Advancing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Audio playback will be available shortly after the conclusion of the telebriefing and can be accessed by calling 888-640-7743 (United States and Canada) or 754-333-7735 (other international callers) and entering replay code 118646.

To better understand how to advance the research on ME/CFS, the NIH Office of Disease Prevention (ODP) convened on December 9‒10, 2014, a Pathways to Prevention workshop that assessed the available scientific evidence. The Panel’s final report, which identifies future research and clinical priorities, incorporates the panel’s assessment of an evidence report, expert presentations, audience input, and public comments. The panel’s report, which is an independent report and not a policy statement of the NIH or the federal government, is now available at https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/workshop-resources.

The workshop was co-sponsored by the NIH Office of Disease Prevention and the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research Working Group.