As part of a major, multi-institutional, multidisciplinary assault against myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a highly debilitating and poorly understood chronic disease, Jackson Laboratory (JAX) Professor Derya Unutmaz, M.D., has received a five-year grant totaling $10,553,732 from the National Institutes of Health. This Center will be one of three ME/CFS Collaborative Research Centers (CRCs) that will be awarded, together with a Data Management and Coordinating Center (DMCC).
According to the U.S. Centers for Disease Control and Prevention, between 836,000 and 2.5 million Americans suffer from ME/CFS. Symptoms include profound fatigue, cognitive dysfunction, sleep abnormalities and pain, which may vary widely in severity.
An emerging hypothesis is that ME/CFS involves perturbations of the components and interplay among a patient’s immune system, metabolism and microbiome (the collection of microorganisms that live in and on each of us).
“For a long time we knew very little about the biological basis of ME/CFS,” says Unutmaz. “Patients presented with a combination of cognitive and debilitating but general physical symptoms. Thus, it has been very difficult to diagnose and there is a great need to develop reliable biomarkers for diagnosis.”
Using systems biology approaches, he says, “We now have the opportunity to determine the biological correlations of this chronic disease that can pave the way for precise diagnosis and develop novel therapies to help patients.”
Under the grant, Unutmaz will collaborate with Drs. Cindy Bateman and Suzanne Vernon at Bateman Horne Center of Salt Lake City, Utah; Dr. Xudong Yao of the department of chemistry at the University of Connecticut in Storrs, Conn.; and Dr. Alison Motsinger-Reif of the statistics department at North Carolina State University in Raleigh, N.C. The San Francisco-based company Precise.ly is involved in clinical tracking of the broader patient community.
Working with JAX Professor Peter Robinson, a leader in computational biology, and Assistant Professor and microbiome expert Julia Oh, as well as researchers at the collaborating institutions, Unutmaz and colleagues will generate one of the largest and most highly detailed collections of clinical and biological ME/CFS patient data that can be analyzed using novel computational technologies such as machine learning approaches.
Unutmaz says the goal of the research center is to “transform the landscape of knowledge of ME/CFS” by tracking down the immune, metabolic and microbiome changes that lead to the disease, “so that the knowledge gained through the work of the Centers become an inflection point towards the goal of treating a disease that causes terrible suffering in millions of patients.”
The grant will be managed by the NIH’s National Institute of Neurological Disorders and Stroke (NINDS), together with a steering committee made up of the directors of each CRC and the DMCC and other program officers who are part of the Trans-NIH ME/CFS Working Group.
The Jackson Laboratory is an independent, nonprofit biomedical research institution based in Bar Harbor, Maine, with a National Cancer Institute-designated Cancer Center, a facility in Sacramento, Calif., and a genomic medicine institute in Farmington, Conn. It employs 2,000 staff, and its mission is to discover precise genomic solutions for disease and empower the global biomedical community in the shared quest to improve human health.
National Institute of Neurological Disorders and Stroke: Topological Mapping of Immune, Microbiota, Metabolomic and Clinical Phenotypes to Reveal ME/CFS Disease Mechanisms, grant number 1U54NS105539-01