ME/CFS Collaborative Research Centers & Data Management Center Announcements

The first ever ME/CFS Collaborative Research Centers and Data Management Center that the National Institutes of Health is funding are now being announced. A hard fought milestone – this is the beginning of the development of crucial infrastructure that has been such a long time coming for the millions who have ME/CFS.

Without out any further delay, our Microbe Discovery Project team are excited and so happy to share that the Center for Infection and Immunity research team at Columbia University have been successful! Here is the full press release from the CII:

NIH Awards $9.6M Grant to Columbia for a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center

Researchers’ Translational Projects Will Yield Insights Into a Disease Affecting up to 2.5 Million Americans

NEW YORK (Sept. 27th, 2017) — 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.

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.

Research Aims

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.”

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Our MDP team has blogged before about how the funding can get stretched out over time and coupled with the amount available it will be low and slow funding. After indirect costs are accounted for this award for CII equates to about 1.3 million a year – for five years. In the big picture, we all know this is a drop in the bucket for the work that needs to be done for ME/CFS. But this does not take away from the fact that this particular drop is a very important commitment and crucial investment into ME/CFS from the NIH.

Does this new award cover all the work needed for the CII’s monster study!? Not quite, it will cover some of the analysis needed but not all. We will put out more information about that later, but in the mean time this latest news is truly brilliant!

Who won funding

Here is the official announcement from the NIH: ‘NIH announces centers for myalgic encephalomyelitis/chronic fatigue syndrome research’ and the highlighted following groups have been successful:

  • Cornell ME/CFS Collaborative Research Center. Principal Investigator: Maureen Hanson, M.D., Cornell University, Ithaca, New York. See press release here. 9.4 million
  • Center for Solutions for ME/CFS. Principal Investigator: W. Ian Lipkin, M.D., Columbia University, New York City. Press release as above here. 9.6 million
  • 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. See press release here. 10.6 million
  • 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.

These announcements have felt like some small oasis in what has been a desert for investigative research into ME/CFS. Our MDP team is ecstatic that we now have some Collaborative Research Centers and this is a commitment from NIH. But this is a rollercoaster because it is also truly tough knowing that fantastic teams also doing critical work have missed out, teams we sorely need researching this disease who should also be funded!

Jennie Spotila has done a breakdown of everything HERE.

Please keep donating to research if you can – it makes a difference!

 

 

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