Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research Centers

Research Centers

The National Institutes of Health (NIH) awarded grants to one Collaborative Research Center (CRC) and one Data Management Coordinating Center.

Center for Solutions for ME/CFS

The Center for Solutions for ME/CFS (CfS for ME/CFS) is an interdisciplinary, inter-institutional center comprising clinicians, clinical investigators, and basic scientists who work together to understand the pathogenesis of ME/CFS and develop evidence-based strategies for interventions that prevent and mitigate disease. The CfS for ME/CFS is designed to rapidly adapt to the insights and opportunities that are continuously emerging in the field of ME/CFS research.

The Columbia Center for Solutions for ME/CFS team

Partnerships

Columbia University proudly partners with Solve ME/CFS Initiative and #MEAction to encourage community involvement in its research efforts. Please visit the Community Page of the CfS for ME/CFS website on the Center for Infection and Immunity's website for more information about community outreach and resources.

@CfsforMECFS

CfsforMECFS

cfsformecfs.org

Youtube: Center for Solutions for ME/CFS

Center Director, W. Ian Lipkin, MD

Center Director, W. Ian Lipkin, MD W. Ian Lipkin, MD, is internationally recognized for his contributions to global public health through the innovative methods he developed for infectious diseases diagnosis, surveillance, and discovery. Most notably, he had the first use of subtractive cloning in microbial discovery and the first use of next generation sequencing for investigating outbreaks. Dr. Lipkin also developed gene capture technologies, including VirCapSeq-VERT and BacCapSeq as well as multiplexed serological assays to detect vector-borne diseases. These advances have been critical in replacing culture-dependent methods of global health management by creating new criteria for disease causation and de-linking spurious associations between putative agents and diseases. Such examples include refuting the MMR vaccine having a role in autism and XMRV in ME/CFS. Dr. Lipkin has been at the forefront of outbreak response to many of the world's recent outbreaks, including West Nile Virus in NYC (1999), SARS in China (2003), MERS in Saudi Arabia (2012-2016), Zika in the United States (2016), and encephalitis in India (2017). He promotes public health awareness via print and broadcast media and also served as the scientific advisor for the Steven Soderberg film Contagion. Some of his most prestigious honors include Pew Scholar (Biomedical Sciences), Walter Reed Distinguished Lecturer, the Drexel Prize in Translational Medicine, the Mendel Medal (Villanova University), and the International Science and Technology Cooperation Award of the People's Republic of China. He is the Director of the Center for Solutions for ME/CFS, the Director for the Center for Research in Diagnostics and Discovery, and the Director for the Center of Infection and Immunity with the Mailman School of Public Health at Columbia University.

Projects

Molecular Correlates of Symptoms Severity in ME/CFS

The goal of this project is to assess whether changes in antibody titers in people with ME/CFS correlate with changes in clinical status. It is believed that biomarkers may vary in concentration or presence as a function of clinical status. To test this theory, 60 people with ME/CFS and 60 healthy controls will use a mobile app to document their clinical symptoms for a year. The mobile app will ask specific questions from participants. Responses that indicate a significant status change will trigger a follow-up visit from a clinical coordinator. This coordinator will collect blood, saliva, and feces samples from the participant at the initial appointment, and at follow-up 2-3 weeks later. Samples will be analyzed to determine whether metabolic, proteomic, microbiological, and transcriptomic abnormalities are maximal on the days of initial negative status change, and whether antibody titer changes are seen in the 2-3 weeks following this status change. Changes in symptoms and antibody titer may indicate primary or reactivation of infection.

This project will explore the molecular correlates of symptom severity in ME/CFS.

Genotype Analysis of ME/CFS

The goal of this project is to identify genetic variants whose frequencies significantly differ between people with ME/CFS and healthy controls. In partnership with the Solve ME/CFS Initiative, 5,000 US-based people with ME/CFS will be recruited as cases; the Kaiser Permanente Research Bank will be used to recruit healthy US-based controls. A genome-wide association study (GWAS) will be conducted on these participants to identify DNA variants that may be associated with ME/CFS. GWAS analysis will be compared to the DecodeME UK study. These results will be used to generate new hypotheses regarding the genes, biological mechanisms, and cell types that contribute to ME/CFS disease etiology and may potentially identify future therapeutic targets.

This project is in partnership with the Solve ME/CFS Initiative, the Kaiser Permanente Research Bank, and the DecodeME UK ME/CFS study and will identify genetics variants that differ between people with ME/CFS and healthy controls.

Pathogen Discovery Through Longitudinal Serological Surveillance in ME/CFS

This study will conduct prospective serological surveillance to determine whether people with ME/CFS are more likely than controls to have immunological evidence of exposure to one or more microbial organisms prior to diagnosis with ME/CFS. Serological samples from 400 people with ME/CFS and 400 controls stored in the Department of Defense Serum Repository will be used in the analysis. Cases will be identified using medical code ICD-10-M for chronic fatigue, with only samples from 2007-2020 included, to avoid inclusion of any Long-COVID cases. All samples will be analyzed using unbiased, comprehensive assays for antibodies to infectious agents. It is theorized that a subset of subjects with chronic fatigue will also have immunological evidence of exposure to microbial organisms prior to diagnosis with chronic fatigue.

This project will use longitudinal serological surveillance to uncover insights into the causes of ME/CFS.

Interested in participating in research?

The Cornell ME/CFS Collaborative Research Center

The Cornell Center for Enervating NeuroImmune Disease conducts and promotes interdisciplinary research to identify the causes, biomarkers, and pathophysiology of ME/CFS that will contribute to prevention efforts and effective treatments. The Center draws scientific expertise from three departments within Cornell's flagship campus and Texas Tech University Health Sciences Center and clinical expertise from the Hospital for Special Surgery in Manhattan and the Manhattan medical practice of Susan Levine, MD, to advance ME/CFS research in the areas of neuroimaging techniques, proteomics, metabolism, molecular biology, biomedical engineering, biotechnology, and genetics.

The Cornell ME/CFS CRC team Credit: Dave Burbank, Cornell Photography

Partnerships

Cornell University is collaborating with Ben Cosgrove, PhD, and Iwijn De Vlaminck, PhD, from the Cornell Meinig School of Biomedical Engineering and Dawei Li from Texas Tech University Health Sciences Center. Physician Susan Levine is screening individuals for inclusion in the studies, and David Fernandez, MD, Laura Donlin, PhD, and Yoshimi Endo, MD, oversee patient interactions at the Hospital for Special Surgery.

@DrMaureenHanson

@CornellMECFS

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Co-Principal Investigators

Center Director, Maureen Hanson, PhD

Photo by Dave Burbank

Center Director, Maureen Hanson, PhD Maureen R. Hanson, PhD, is the Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics at Cornell University. She directs Cornell's Center for Enervating NeuroImmune Disease and the NIH ME/CFS CRC's project concerning extracellular vesicles as possible mediators or sources of biomarkers for the disease, particularly after an exercise challenge. Students in Cornell's graduate programs in Genetics and Development in Biochemistry, Molecular and Cell Biology are performing thesis research on ME/CFS under her supervision. Dr. Hanson's research on the pathophysiology of ME/CFS has encompassed mitochondrial genetics, the gut microbiota, cellular metabolism, gene expression, and immune cell function.

Project Director, Andrew Grimson, PhD

Photo by Dave Burbank

Project Director, Andrew Grimson, PhD Andrew Grimson, PhD, is an Associate Professor in the Department of Molecular Biology and Genetics at Cornell University. The Grimson Laboratory specializes in the genomics of gene regulation, the mechanisms used by cells to increase or decrease the production of gene products. Although the causes of ME/CFS remain unknown, substantial evidence suggests that immune cell impairment (or dysregulation) is an underlying cause or major consequence of the disease.

Co-Investigators

Project Director, Ben Cosgrove, PhD

Project Director, Ben Cosgrove, PhD Ben Cosgrove, PhD, is an Associate Professor in the Cornell Meinig School of Biomedical Engineering. The Cosgrove Laboratory uses bioengineering methods to study how problems in gene activation and cell communication affect muscle stem cells and tissue repair during aging and illness. Dr. Cosgrove’s research aims to bring transformative technologies to the study and application of adult muscle stem cells to regenerative therapies for degenerative skeletal muscle diseases.

Center Clinical Core Co-Lead, Iwijn De Vlaminck, PhD

Center Clinical Core Co-Lead, Iwijn De Vlaminck, PhD Iwijn De Vlaminck, PhD, is an Associate Professor in the Cornell Meinig School of Biomedical Engineering. His research focuses on the development of precision medicine technologies to monitor and study infectious and immune-related disease. Dr. De Vlaminck’s research has led to noninvasive liquid biopsies to diagnose organ transplant rejection, urinary tract infection, blood-borne infection, and complications of stem cell transplantation.

Center Clinical Core Co-Lead, Dawei Li, PhD

Center Clinical Core Co-Lead, Dawei Li, PhD Dawei Li, PhD, is an Associate Professor at Texas Tech University Health Sciences Center and a computational biologist. The Li Lab will use multidisciplinary approaches to investigate the molecular basis of ME/CFS with the goal of developing novel tools to identify disease risks to inform the diagnosis, treatment, and prevention of ME/CFS.

Additional Center Staff

Research Core: Jen Grenier, PhD

Research Core: Jen Grenier, PhD Jen Grenier, PhD, is Director of the Transcriptional Regulation and Expression (T-REx) Facility and the Genomics Innovation (GI) Hub at Cornell University. She has 20 years of experience in technology development, most recently in project management and data analysis for genomics applications. Prior to creating the T-REx and GI labs at Cornell, Dr. Grenier worked at the Broad Institute in Cambridge, Massachusetts, and at small biotechnology companies in Madison, Wisconsin. Dr. Grenier has a PhD in Genetics from the University of Wisconsin-Madison and a BS in Biological Sciences from Stanford.

Center Manager, Carl Franconi, MS

Photo: Center Integrative Data Analysis Core Co-Lead, Carl Franconi, MS

Center Manager, Carl Franconi, MS Carl Franconi, MS, is Center Manager for the Cornell University ME/CFS CRC and Manager of Dr. Hanson's lab in the Department of Molecular Biology and Genetics at Cornell University. He has a foundation in microbiology and molecular biology that started at the University of South Florida where he earned a BS in Microbiology and an MS in Cell and Molecular Biology. Prior to joining the Center, Mr. Franconi was a biological administrator and scientist for an ISO 17025-accredited laboratory at the Florida Department of Agriculture and Consumer Services. He brings laboratory and data management, collaborator coordination, and quality assurance experience.

Projects

Dissecting Myogenic-Endothelial-Immune Interactomes in Human ME/CFS Skeletal Muscles (Lead, Dr. Ben Cosgrove)

The goal of this project is to identify molecular and cellular alterations present in ME/CFS skeletal muscles through innovative approaches to capture the transcriptome and epigenome with single-cell and spatial resolution in human biopsies. Using single nuclei isolated from muscle biopsies, the genes expressed in each cell, and the configuration of chromosomes in each cell, will be determined. Gene expression information will also be obtained from small regions of cross-sections (slices) of muscle tissue (spatial transcriptomics). All of this information will be used to determine whether specific types of muscle-resident cells are dysregulated at the transcriptional and epigenetic levels in people with ME/CFS compared to healthy controls.

This project will be led by Dr. Ben Cosgrove, who will collaborate with Dr. Iwijn De Vlaminck. Both are faculty in the Cornell Meinig School of Biomedical Engineering. Molecular data analysis will also occur through a collaboration with Dr. Jen Grenier, the Genomics Core Lead, who heads the Cornell Genomics Innovation Hub.

Circulating Signals of ME/CFS (Lead, Dr. Maureen Hanson)

The goal of this project is to determine whether RNA released into the plasma after exercise is different between people with ME/CFs and healthy controls. We will examine cell-free RNA (cfRNA) from blood collected from 173 participants in the first phase of our NIH Center (2017–2023). Our premise is that identification of the cell types of origin of cfRNA in people with ME/CFS and healthy controls before and after exercise may provide clues about disruptions that happen after people with ME/CFS increase their activity levels. Learning which cell types have altered patterns of injury and cell death in ME/CFS may reveal immune and tissue involvement in the pathophysiology of post-exertional malaise (PEM).

Our team will also examine the proteins in extracellular vesicles (EVs), before and after exercise, to see whether proteins present in EVs are different in people with ME/CFS from those in healthy controls. The team will also isolate EVs from platelets, neuronal cells, and blood vessels.

This project will be led by Dr. Maureen Hanson from the Cornell Center for Enervating NeuroImmune Disease. Dr. Iwijn De Vlaminck’s group in the Meinig School of Biomedical Engineering will be responsible for cfRNA analysis. This study will include multi-omic analysis of data from the original and new cohort.

Immune Dysfunction in ME/CFS (Lead, Dr. Andrew Grimson)

The goal of this project is to comprehensively investigate monocyte and platelet abnormalities in ME/CFS. Our team will use multi-omic approaches to identify gene regulatory changes in monocytes. We will also test whether ME/CFS causes alterations in the ability of monocytes to migrate and differentiate into macrophages, a critical function of monocytes.

We will complete the following as part of our investigation of platelet abnormalities: examine the platelet transcriptome, perform assays to test platelet function, and examine interactions between platelets and other immune cells in ME/CFS that might contribute to their altered state in ME/CFS. We will also assess whether the cargo of platelet-derived EVs is altered in ME/CFS, complementing the analysis of platelets themselves.

This project is based on previous work at the Center, which discovered that people with ME/CFS had abnormalities in monocytes and platelets. Our current work will examine interactions between platelets and other immune cells in ME/CFS that might contribute to their altered state.

This project will be led by Dr. Andrew Grimson, an Associate Professor at Cornell University, in collaboration with Dr. Maureen Hanson's group and Dr. Dawei Li, an Associate Professor at Texas Tech University Health Sciences Center. Dr. Grimson’s lab will use a combination of genomic and functional assays to investigate components of the immune system in ME/CFS, working closely with Dr. Li, a computational biologist. The genomics assays will be performed in partnership with Dr. Jen Grenier, who leads our Research Core component of the Center.

Interested in participating in research?

Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network

The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network, with headquarters located at the Sainte-Justine University Hospital Research Centre in Montreal, is a national research network funded by the Canadian Institutes of Health Research (CIHR). Directed by Alain Moreau, PhD, the research network comprises an interdisciplinary and collaborative team of researchers, clinical scientists, trainees, patients, caregivers, and advocates who are committed to working together to support the ICanCME Research Network's vision, mission, and strategic pillars.

The vision of the network is to focus on initiating, supporting, and sustaining innovative and collaborative Myalgic Encephalomyelitis (ME) research in Canada. Our bold mission is committed to a patient-centred research program from discovery to implementation science to study and understand the complex pathophysiology of ME. Ultimately the network aims to establish collaborative work by bringing different fields of study together to develop novel approaches to test and treat ME.

The activities of the network are centered around three strategic pillars:

Build a catalyst-accelerator program to fill existing gaps in ME research, stimulate new discoveries and sustain excellence in ME research in Canada.
Develop a sustainable research infrastructure for ME and implement the integration and standardization of databases and biobanking procedures.
Develop talent to enhance ME research capacity and excellence in research.

The network will play an important role in coordinating efforts of Canadian and international stakeholders, and transforming the ME research landscape in Canada and beyond.

The Jackson Laboratory ME/CFS Research Team

Partnerships

The ICanCME Research Network has formed partnerships with three national organizations, Millions Missing Canada, Action CIND, and the National ME/FM Action Network, as well with several provincial ME organizations including l'Association Québécoise de l'Encéphalomyélite Myalgique (AQEM), the ME/FM Society of BC, and the broader patient community to initiate, develop and sustain an ME research ecosystem across Canada.

@ICanCMEResearch

Network Director, Alain Moreau, PhD

Network Director, Alain Moreau, PhD Alain Moreau, PhD, is a Full Professor in the Faculty of Dentistry (Stomatology Department), cross-appointed to the Biochemistry and Molecular Medicine Department in the Faculty of Medicine at Université de Montréal. He served as Director of Research and Chief Scientific Officer of Sainte-Justine University Hospital (2013-2016). He is currently Director of two national research networks - the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network and the Network for Canadian Oral Health Research (NCOHR) - funded by the Canadian Institutes of Health Research (CIHR), and serves on the Advisory Board of CIHR’s Institute of Musculoskeletal Health and Arthritis (IMHA).

Dr. Moreau is an internationally recognized expert on the molecular genetics of pediatric scoliosis. His discoveries led to multiple peer-reviewed papers, international conferences as a guest speaker, several awards as well as 60 patents covering innovative diagnostic tests and therapeutic molecules. Dr. Moreau is the co-founder and Chief Scientific Officer of Inception Therapeutic Inc., a start-up based in Montreal developing diagnostic tests for primary osteoarthritis and new disease-modifying osteoarthritis drugs. Dr. Moreau’s primary research interests also target other complex adult diseases such as osteoarthritis and myalgic encephalomyelitis.

National Network Coordinator, Iona Worden-Driscoll

National Network Coordinator, Iona Worden-Driscoll Iona Worden-Driscoll holds a BSc in Mathematics and Statistics and an MBA from Dalhousie University (Halifax, Nova Scotia, Canada). She has extensive management and research experience, having worked as a coordinator for other CIHR-funded research networks and an operations manager and research consultant within industry. She oversees the functioning of the ICanCME Research Network's activities as well as provides a liaison between network members and stakeholders with the view to identify opportunities for increased partnership and collaboration.

Interested in participating in research?

Data Management and Coordinating Center

RTI International (RTI) leads the Data Management and Coordinating Center (DMCC) for the multi-center ME/CFS Collaborative Research Network. In this capacity, RTI will provide advanced computing systems and expertise to bring together research data from the CRCs into a unified multi-omic database, which combines information from studies looking at genes, proteins, immune function, etc. This data management, analytic support, and coordination will promote the development of new ideas to enhance ME/CFS research by augmenting existing CRC expertise and fostering partnerships among the CRCs and the broader research community.

RTI will foster increased transparency and collaboration within the ME/CFS community by coordinating the Network's community outreach activities and hosting a public website. RTI, a large nonprofit research institute, has served as a data coordinating center for more than 40 multi-site/multi-study research networks, including networks focused in maternal and child health, traumatic brain injury, pelvic floor disorders, blood banking and transfusion medicine, sickle cell disease, Zika virus, and other emerging health challenges.

RTI Data Management and Coordinating Center team

Partnerships

RTI is partnering with Solve ME/CFS Initiative to engage the patient community in its research efforts.

@RTI_Intl

Center Director, Megan Ulmer Carnes, PhD

Center Director, Megan Ulmer Carnes, PhD Megan Ulmer Carnes, PhD, is a research statistician and genomics research scientist at RTI International. Dr. Carnes leads multisite data coordinating centers, clinical trial networks, and supports investigator-initiated research projects. Dr. Carnes’ technical expertise includes genetic epidemiology and multi-omic data analysis including genome-wide association studies, epigenomics, transcriptomics, and microbiome studies with a focus on complex human disease phenotypes with multifactorial disease etiology. Dr. Carnes is the Center Director for RTI’s Data Management and Coordinating Center for the ME/CFS Collaborative Research Network. Dr. Carnes has led protocol development, study design, biospecimen collection, and statistical analyses of translational studies. She has also provided subject matter expertise and leadership for the development of user-friendly data portals, such as mapMECFS.

Center Associate Director, Linda Morris Brown, MPH, DrPH

Center Associate Director, Linda Morris Brown, MPH, DrPH Linda Morris Brown, MPH, DrPH, is a senior research epidemiologist at RTI International. In this capacity, Dr. Brown directs data coordinating centers for large multi-site clinical trials and epidemiologic studies; conducts epidemiologic research and analyzes epidemiologic data for large-scale, multi-disciplinary studies in the United States and worldwide; and performs quality assurance data audits of health data. Dr. Brown is the Center Associate Director for RTI's Data Management and Coordinating Center for the ME/CFS Collaborative Research Network. Before joining RTI, Dr. Brown served for 30 years as a Commissioned Officer in the U.S. Public Health Service at the National Cancer Institute at the National Institutes of Health and was Assistant Chief in the Division of Cancer Epidemiology and Genetics for 10 years.

Interested in participating in research?

Funding provided through grants U54-AI-178855 and U24-NS-105535 supported by: