The National Institutes of Health (NIH) will award four grants to establish a coordinated scientific research effort on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The total cost of the projects for fiscal year 2017 will be over $7 million, with support from multiple NIH Institutes and Centers that are part of the Trans-NIH ME/CFS Working Group.
The grants will support the creation of a consortium made up of three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC). The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS. The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.
“These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease,” said NIH Director Francis S. Collins, M.D., Ph.D.
ME/CFS, which affects more than 1 million Americans, is characterized by profound fatigue that does not improve with rest, and may include problems with thinking and memory, pain and a range of other symptoms that negatively impact everyday life. A key feature of the disease is post-exertional malaise, which is a worsening of symptoms following mental or physical activity. The disease can last for years or decades, with those most severely impacted ending up house- or bed-bound. It is unknown what causes the disease and there are no proven treatments.
“These grants will use innovative technologies and research methods to unravel this devastating disease, which we know so little about,” said Walter Koroshetz, M.D., director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS) and chair of the Trans-NIH ME/CFS Working Group.
An important aspect of the CRCs is their inclusion of community engagement and involvement of the ME/CFS advocacy groups and individuals with ME/CFS in their programs.
“The researchers will be encouraged to work with the ME/CFS community to help move the field forward. Individuals with ME/CFS provide a unique perspective on the disease, and their experiences with ME/CFS will help advance research and move us closer to a cure,” said Dr. Koroshetz.
The grants will be managed by NIH’s National Institute of Allergy and Infectious Diseases and NINDS. Additional participating NIH Institutes and Centers include: the National Heart, Lung, and Blood Institute; the National Human Genome Research Institute; the National Institute on Alcohol Abuse and Alcoholism; National Institute of Arthritis and Musculoskeletal and Skin Diseases; the National Institute on Drug Abuse; the National Institute of Mental Health; and the National Center for Complementary and Integrative Health and the Office of the Director.
The grants are awarded to:
- Cornell ME/CFS Collaborative Research Center
Principal Investigator: Maureen Ph.D., Cornell University, Ithaca, New York; 1U54NS105541-01
Dr. Hanson and her colleagues will investigate the biological mechanisms underlying ME/CFS by obtaining blood samples and conducting brain scans on individuals with ME/CFS before and after they undergo an exercise test designed to bring on symptoms of post-exertional malaise. Dr. Hanson’s team will use a wide range of tools and technologies to test the role of genes, inflammation and the immune system in this disease.
- Center for Solutions for ME/CFS
Principal Investigator: W. Ian Lipkin, M.D., Columbia University, New York City; 1U54AI138370-01
Dr. Lipkin and his team will examine an existing collection of biological samples from people with ME/CFS and healthy controls for microbial agents, such as viruses and bacteria, that may play a role in the disease. Dr. Lipkin’s group will use cutting-edge technology to conduct comprehensive genetic analyses and to identify metabolites (small molecules that have a variety of functions in cellular processes) that are present in the samples, which may help in the development of diagnostic tests for ME/CFS.
- Topological Mapping of Immune, Metabolomic and Clinical Phenotypes to Reveal ME/CFS Disease Mechanisms
Principal Investigator: Derya Unutmaz, M.D., The Jackson Laboratory, Farmington, Connecticut; 1U54NS105539-01
Dr. Unutmaz and his group will use novel tools to take a detailed look at how the immune system, the microbiome (our body’s complete collection of microbes including bacteria and viruses) and metabolism (the chemical reactions that produce energy for the body) interact in ME/CFS. A greater understanding of those interactions may help researchers identify causes of the disease and lead to the development of therapies.
- Data Management and Coordinating Center (DMCC) for the ME/CFS Collaborative Research Centers
Principal Investigator: Rick L. Williams, Ph.D., Research Triangle Institute, Research Triangle, North Carolina; 1U24NS105535-01
Dr. Williams and his team will lead the DMCC that will bring together research data from the CRCs into one database. Dr. Williams’ group will promote collaboration among the centers and the broader research community. They will provide state-of-the-art data processing systems and analytic instruments, as well as overseeing efforts to standardize data that is collected by the researchers.