NEW YORK (GenomeWeb) – A panel convened by the National Institutes of Health today called for more funding for research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Saying ME/CFS is a complex, multifaceted disorder, the independent panel called for steps to address what is sees as shortcomings in research into the disorder and gaps in knowledge about it. In addition to limited information about the disease and insufficient funding, the panel noted problems with prior research studies, such as small sample sizes, the inclusion of patients with differing symptoms across studies, and the exclusion of key populations.
Among the panel's recommendations is the maintenance of biological samples, such as serum, blood, DNA, and RNA, in a repository to support biomarker discovery studies, and the provision of education and training to healthcare providers about diagnosing and treating ME/CFS.
Additionally, it said that the ME/CFS research, medical, and patient communities need to create a standard case definition to better understand the disease and accelerate the development of new diagnostic and prognostic tools. It also recommended the creation of a network of collaborative, multidisciplinary centers, and the development of public-private partnerships to fund and advance research.
In a statement, Carmen Green, the panel chair said, "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."
Green is also a 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," she added. "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."