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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.
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.
The grants are awarded to:

  • Cornell ME/CFS Collaborative Research Center
    Principal Investigator: Maureen Hanson, M.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.The NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.


Senior Member
The other side.
edit - it seems all references to this incident have been removed from here - I assume there must be a reason so.....
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It's good news that we have finally got this far and the 3 research centres look like worthy winners.

However it makes you wonder when the NIH says things like they don't receive enough high quality grant applications for ME. I am sure they could easily fund other groups based on the quality of the applications.

Anyway, it's a big chunck of change to research ME, so definitely a milestone.
The National Institutes of Health announced Sept. 27 that Cornell is one of three institutions nationwide to receive funding to establish a collaborative research center for the study of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Each center will serve as a hub that partners with other institutions to study the disease.

More than one million people in the U.S. suffer from (ME/CFS), yet causes and effective treatments for the debilitating disease remain a mystery. ME/CFS leads to debilitating fatigue that is not helped by rest. Symptoms may include body pain, headaches, trouble thinking clearly, difficulty sleeping, and prolonged and unexplained fatigue following exercise or even mild physical exertion.

Cornell will receive close to $9.4 million over five years to establish the Cornell Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center, which will span Cornell’s Ithaca campus, Weill Cornell Medicine, Ithaca College, the Boyce Thompson Institute, the Workwell Foundation, EVMED Research, the SOLVE ME/CFS Initiative and private ME/CFS medical practices.

“Being awarded an NIH ME/CFS Center means we have taken on a huge responsibility to the more than one million people affected by this life-limiting disease that has no FDA-approved drugs and a poor prognosis for recovery,” said Maureen Hanson, the Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics, who will direct the center. “Understanding the biological basis of the illness is essential to develop therapies that will allow those who are now trapped in their beds and homes to resume active lives.”
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 theory 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.”