The National Institutes of Health has awarded a five-year $9.6 million grant to the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health to create the Center for Solutions for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (CfS for ME/CFS), an inter-disciplinary, inter-institutional research group dedicated to understanding the biology of the disease in order to develop effective means to diagnose, treat and prevent it. 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).
As many as 2.5 million Americans have ME/CFS, a debilitating disease characterized by extreme fatigue after exertion that is not relieved by rest, and other symptoms, including muscle and joint pain and cognitive dysfunction. There are no laboratory tests for diagnosis or specific treatments for ME/CFS.
The CfS for ME/CFS is led by W. Ian Lipkin, director of CII and John Snow Professor of Epidemiology at the Mailman School and is one of the NIH's ME/CFS CRCs for ME/CFS research. 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 a Data Management Coordinating Center and will be shared among researchers within the CRCs and more broadly with the research community. (Read the NIH announcement.)
The CfS for ME/CFS grant will be managed by the NIH's National Institute of Allergy and Infectious Diseases (NIAID), 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 CfS for ME/CFS will pursue basic research and develop tools to help physicians and individuals with ME/CFS monitor the course of illness.
In laboratory studies, the researchers will use state-of-the-art methods to analyze molecular footprints of potential bacterial, fungal, and viral triggers, together with corresponding immune responses, including autoantibodies. Other studies will analyze metabolites and gene expression in individuals with ME/CFS after physical activity, and mine databases for insights into clinical features, comorbidities, and sub-types that could refine laboratory analyses and enhance their care. ME/CFS scientists will also work with the ME/CFS community, including clinicians and people with ME/CFS, to design a mobile app called myME/CFS that will allow them to track symptoms in response to stressors and interventions. Aggregated data from the apps may yield insights into triggers that initiate or exacerbate disease, including links between infection and disease in a subset of patients. Overall, the CfS for ME/CFS studies may lead to the future development of animal models of ME/CFS and/or clinical trials of antibiotics, pre- and probiotics, antifungals, antivirals or immunomodulatory treatments.
Outreach and Partnership With the ME/CFS Community
The CfS for ME/CFS will work closely with ME/CFS community through partnerships with the Solve ME/CFS Initiative, #MEAction, and the Microbe Discovery Project, representatives from which will be represented on the Center's Scientific Advisory Board and a separate Community Advisory Committee. CfS for ME/CFS will also engage with the ME/CFS community and disseminate findings, including its own and those from the other ME/CFS CRCs and share research presentations, both online and through social media. In addition, CfS for ME/CFS will solicit input from the community in developing the careers of junior scientists to forge lasting connections between the two groups.
"One of our goals is to dissolve barriers between scientists, clinicians, individuals with ME/CFS, and advocates," says Dana March, assistant professor of Epidemiology at the Mailman School and deputy director and administrator of CfS for ME/CFS. "By connecting with the global digital ME/CFS community, we aim to increase the visibility and reduce the stigma of what many have described as an invisible population."
Leading Clinicians and Scientists
Other members of CfS for ME/CFS include clinicians Lucinda Bateman (Bateman Horne Center), Anthony Komaroff (Harvard University), Susan Levine (New York City), Jose Montoya (Stanford University), Daniel Peterson (Sierra Internal Medicine), as well as laboratory-based investigators Oliver Fiehn (University of California, Davis), John Greally (Albert Einstein College of Medicine) and Mady Hornig (Columbia University).
Many in the group have a history of research collaborations, including an NIH-funded study led by Ian Lipkin that ruled out XMRV (xenotropic murine leukemia virus-related virus) as a trigger for ME/CFS; studies funded by Hutchins Family Foundation through its Chronic Fatigue Initiative that uncovered immune evidence of biological disease, disease stages, subtypes of ME/CFS, and disturbances of fecal microbiota; and research supported by the Microbe Discovery Project, a crowdfunding effort, to explore the role of infection, immunity and the microbiome in ME/CFS and to identify biomarkers.
"The pace of research has increased, thanks largely to advocacy by the ME/CFS community and the generous support of the Hutchins Family Foundation," says Lipkin. "We are grateful to NIH for recognizing the potential of this ME/CFS CRC to capitalize on this momentum, bringing together the very best clinical and scientific talent and technology to do work needed to turn a corner on this disease."