Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Scientific Advisory Board

Ronald W. Davis, PhD, Chair of our Open Medicine Foundation Scientific Advisory Board, brought together world-renowned researchers with a track record of innovation and success to take on the End ME / CFS Project. As part of this board, they are contributing their time, expertise, and brilliant minds to help guide the  open, collaborative research needed to develop precise diagnostic tools and life-changing treatments for ME / CFS and related chronic complex diseases.  We invite you to learn more about our esteemed ME / CFS Scientific Advisory Board members, which includes two Nobel laureates and six National Academy of Sciences members:

Ron Davis

Dr. Davis’ history of interdisciplinary work, technology development, and attacking previously unsolvable biological problems (both in genetics and traumatology) makes him the ideal scientist to lead a collaborative consortium to solve the mystery of ME / CFS. Additionally, he brings a strong passion to this cause in hopes of finding a cure for his son, who suffers from a severe case.

Dr. Davis is a professor of Biochemistry and Genetics at Stanford University School of Medicine, and he is the director of the Stanford Genome Technology Center. Dr. Davis holds a PhD in chemistry from Caltech. He is a member of the National Academy of Sciences.

Chris Armstrong

Chris Armstrong, PhD, is a Visiting Scholar at Stanford and is most well known for his research using metabolomics to observe biochemical alterations in ME/CFS patients. He began his work in this field at the University of Melbourne, beginning a PhD project to apply metabolomics to study Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and published his first ME/CFS metabolomics study on blood and urine in 2015.

Since then Chris has set up collaborative efforts to apply metabolomics to immunological experiments on ME/CFS, observing how metabolism may relate to immune cell function. He has also focused on longitudinal research in ME/CFS while looking to extend metabolic capabilities across the field of ME/CFS to help collate different patient groups.

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Dr. Bell is a widely respected clinician (now retired) who cared for ME / CFS patients in one of the well-known cluster outbreaks in the mid-1980s. Through his practice in Lyndonville, New York, he particularly gained insights into pediatric cases and the course of the disease over many years. His name appears on articles and research studies about ME / CFS immune dysfunction, autonomic dysfunctions, blood vessel abnormalities, difference between ME / CFS and depression, and a longitudinal study of his patients. He is also one of the authors of a 2008 pediatric case definition for ME / CFS.

Dr. Bell received his college degree from Harvard University and his medical doctorate degree from Boston University. His 1995 book, “The Doctor’s Guide to Chronic Fatigue Syndrome,” includes a disability scale measurement tool that is still used today. He has appeared as an expert in documentaries and news media reports about the disease. In 2003, Dr. Bell served as the chairman of the US Chronic Fatigue Syndrome Advisory Committee. In 2011, he also served on the board of the International Association of CFS/ME.

PaulBerg

Dr. Berg is an expert on the chemical processes involved in cellular metabolism. He is noted for being one of the first scientists to show folic acid and B12 are needed for healthy energy production. He is considered one of the fathers of modern genetic engineering. He now pursues public health policy in relation to biomedical research and is writing a book.

Dr. Berg is a Nobel laureate in the Chemistry category. He was honored with the National Medal of Science in 1983 and the National Library of Medicine Medal in 1986. He is a professor emeritus of Stanford University. Dr. Berg holds a PhD in biochemistry from Case Western Reserve University. He is a member of the National Academy of Sciences.

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Dr. Bergquist is a Full Chair Professor in Analytical Chemistry and Neurochemistry in the Department of Chemistry at Uppsala University, Sweden, Adjunct Professor in Pathology at the University of Utah School of Medicine, and Distinguished Professor in Precision Medicine at Binzhou Medical University in Yantai, China.

His group develops tools for screening and discovery of biomarkers in different diseases. Dr. Bergquist studies numerous conditions, including neurodegenerative disorders. His research into ME/CS is focused on characterizing the neuroimmunological aspects of the disease using proteomics and metabolomics, with a special interest in cerebrospinal fluid studies and autoantibodies.

Capecchi_Mario

Dr. Capecchi is an expert on human genetics, with a focus on the interaction of immune cells in the brain. His current research involves investigating the molecular genetic causes underlying human disorders involving the immune system and the brain. His expertise and insights in this area will be essential in understanding ME / CFS.

Dr. Capechhi is a Nobel laureate in the Physiology or Medicine category. He is the distinguished professor of Human Genetics at University of Utah School of Medicine. Dr. Capecchi holds a PhD in biophysics from Harvard University. He is a member of the National Academy of Sciences.

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As a world-famous immunologist, Dr. Davis’ focus is to develop a broad understanding of the human immune system, particularly what a healthy immune system looks like. The immune system is clearly involved in ME / CFS, and Dr. Davis will be invaluable on the Advisory Board.

Dr. Davis is a professor of Microbiology and Immunology at Stanford University School of Medicine and director of the Stanford Institute for Immunity, Transplantation and Infection. Dr. Davis holds a PhD in Molecular Biology from Caltech. He is a member of the National Academy of Sciences.

Oysten Fluge Head Shot 2

Dr. Fluge has been courageous in pursuing his observations on the effects of rituximab on ME / CFS patients when that issue was not the planned focus of his investigation. He has now completed a double-blind, well-controlled, multi-center clinical trial on the effects of Rituxamab. He has continued to follow where the data lead him into cellular and molecular analyses. This kind of excellent, open-minded science is just what we need in our quest for an end to ME / CFS.

Dr. Fluge is the Senior Consultant supervising the ME / CFS research group at the Department of Oncology and Medical Physics at the University of Bergen, Haukeland University Hospital, Bergen, Norway.

Drs. Fluge and Mella work together on the Norwegian Rituximab and cyclophosphamide trials with ME / CFS patients.

Jennifer Frankovich

Jennifer Frankovich, MD, is a pediatric rheumatologist in California and is an expert in systemic autoimmune and post-infectious inflammatory diseases that affect the brain and specializes in Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)/ Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). Dr. Frankovich is the PANS Program Director at Stanford Children’s Hospital and an Associate Professor in Pediatrics and Pediatric Rheumatology at Stanford School of Medicine. Dr. Frankovich’s clinical experience in autoimmunity and post-infectious inflammatory diseases are highly relevant as ME / CFS is thought to have an autoimmune component that might manifest after symptoms of an infection.

Dr. Frankovich received her MD from the University of Nevada School of Medicine and completed her residency and fellowship at Stanford University.

MaureenHanson

Dr. Hanson has conducted groundbreaking molecular analysis of many facets of ME / CFS. She analyzes her data with sophistication and insight. It’s exciting to have such an accomplished top-notch scientist working on this disease.

Dr. Hanson is the Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics at Cornell University. She previously was on the Biology faculty at the University of Virginia, Charlottesville. She holds a Ph.D. in Cell and Molecular Biology from Harvard University. She is a member of the National Academy of Sciences and American Academy of Arts and Sciences.

HCraigHeller

Dr. Heller has a wide breadth of knowledge of biology. He conducts extensive research in exercise physiology, including examining fatigue in athletes. Dr. Heller has developed an instrument that allows increased exercise without fatigue. Having someone who understands fatigue and the normal response to exercise is essential for understanding how it goes wrong in ME / CFS.

Dr. Heller is professor of Biology at Stanford University. He holds a PhD in biology from Yale University and is a physiologist and biologist at Stanford.

omf-olav-mella

Dr. Mella is an adjunct professor working in the ME / CFS research group at the Department of Oncology and Medical Physics at the University of Bergen, Haukeland University Hospital, Bergen, Norway.

Alain Moreau

Dr. Alain Moreau 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 The Network for Canadian Oral Health Research (NCOHR), and he serves on the Advisory Board of the Institute of Musculoskeletal Health and Arthritis of The Canadian Institutes of Health Research (CIHR).

More recently, Pr. Moreau was appointed Director of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network, another national research network funded by CIHR. He 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. Pr. 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 osteoporosis and myalgic encephalomyelitis.

Bob Naviaux

Dr. Naviaux is internationally known for his expertise in human genetics, inborn errors of metabolism, metabolomics, and mitochondrial diseases. He discovered the cause and created the diagnostic test for Alpers syndrome, a classical form of mitochondrial disease. He has expertise in virology and molecular and cellular biology. Dr. Naviaux also works in oceanographic ecosystems research and is the director of the first FDA-approved clinical trial to study suramin as a treatment for autism. He was trained at the NIH in tumor immunology and natural killer cell biology, and he trained at the Salk Institute in virology and gene therapy.

Dr. Naviaux runs the Robert Naviaux Laboratory at UC San Diego, which is doing genetic research into mitochondrial dysfunctions. He is founder and co-director of the Mitochondrial and Metabolic Disease Center at UCSD, the co-founder and a former president of the Mitochondrial Medicine Society, and a founding associate editor of the journal Mitochondrion. He studied biochemistry at Georg-August University in Göttingen, Germany.

Dan Peterson

Daniel L. Peterson, MD, is an internist in Incline Village, Nevada and recognized medical expert on ME / CFS. Dr. Peterson has devoted more than 25 years of his clinical career to diagnosing and caring for patients with ME / CFS and related neuroimmune disorders, as well as collaborating with researchers to better understand the illness. Dr. Peterson’s experience as both a clinician and a research collaborator provide a unique perspective on ME / CFS for developing translational science.

Dr. Peterson’s interest in ME / CFS began in 1984 when Incline Village became the site of an unusual cluster of individuals presenting with unexplained flu-like symptoms that would not go away. Many of those individuals remained bedridden for extended periods of time. Dr. Peterson was perhaps the first to recognize these symptoms as something deserving of more attention.

Dr. Peterson received his MD from the University of Rochester School of Medicine, Rochester, NY, and completed his internship and residency at the University of Utah Medical Center.

OliveraBaldomero

Through his studies in neurobiology and cone snails, Dr. Olivera has been able to develop a number of pain drugs, one of which is a thousand times more effective than morphine. Dr. Olivera is an expert on conotoxins that can modulate nerve function. He believes the future of neuroscience depends on collaboration across disciplines. Dr. Olivera brings to OMF his expertise in neurobiology and developing drugs for intervening in neurological processes, as well as his extraordinary creativity and thoughtful approach to scientific problems.

Dr. Olivera is a professor of Biology at the University of Utah and is a lead scientist in the research of cone snail toxins. He holds a PhD in biophysical chemistry from Caltech. He is a member of the National Academy of Sciences.

Michael Snyder PHD

Michael Snyder, PhD, is a leader in the field of functional genomics and proteomics, and one of the major participants of the ENCODE project. Seminal findings from the Snyder laboratory include the discovery that much more of the human genome is transcribed and contains regulatory information than was previously appreciated, and a high diversity of transcription factor binding occurs both between and within species. He has also pioneered the use of different state-of-the-art “omics” technologies as well as wearable devices (smart watches and continuous glucose monitoring) for managing human health. Dr. Synder’s expertise in “omic” and wearable technologies will be invaluable in both current and future ME / CFS research efforts.

Dr. Snyder is the Stanford W. Ascherman Professor and Chair, Department of Genetics and Director, Center for Genomics and Personalized Medicine at Stanford University. Dr. Snyder received his PhD at the California Institute of Technology and carried out his postdoctoral training at Stanford University.

CEM-Tompkins-profile

Sumner M. Redstone Professor of Surgery, Harvard Medical School

Founding Director, Center for Surgery, Innovation & Bioengineering, Massachusetts General Hospital

Dr. Ronald Tompkins’s work in the genomics, proteomics, and ultrastructural roles in inflammation and metabolism promises to discover underlying mechanisms of ME / CFS, and his leadership in multidisciplinary, multi-institutional large research projects will energize OMF’s efforts to ignite Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) research across the globe.

Dr. Tompkins is widely recognized for his work in translational science, medicine, and engineering. He graduated from Tulane University in 1972 and Tulane School of Medicine in 1976. During his training in surgery at the MGH, Dr. Tompkins earned a Doctorate in chemical engineering at Massachusetts Institute of Technology (MIT). He completed his Harvard surgery residency and joined the surgical faculty at MGH in 1987. He served as Chief of Trauma and Burn Services at the MGH and Chief of Staff at the Boston’s Shriners Hospital for 22 years.

Dr. Tompkins has led a fundamental and clinical research program that began in 1990, with an NIH-supported first-in-the-nation Specialized Research Center in trauma.  It’s associated Trauma Research Training Program has produced dozens of the current leaders in the clinical and research field of injury. In 2001, he led a large-scale Collaborative Research Program in injury research, which was the largest NIH-funded program ever received by MGH and the 10th largest NIH extramural program to date nationally. These programs – with well more than $200M in public funding – have provided Dr. Tompkins with a unique understanding of inflammation and metabolic features of humans in response to severe stresses.

Following these decades of significant clinical and basic science discovery, Dr. Tompkins founded a center for research and innovation, which has translated scientific applications into multiple inventions and companies. Three previous companies eventually sold for a total of more than $1.2B. He currently serves on the Boards of Directors of start-up companies in a vast array of medical applications involving Treatment for Alzheimer’s Disease, Point-of-Care Diagnostics, Chimeric Antigen Receptor (CAR) T-cell Therapies, Microcirculatory Dysfunction in the Critically Ill, and Novel Approaches to Cellular Function Ex Vivo.

Dr. Tompkins has served on dozens of Scientific, Not-for-Profit, and Academic Boards and National Committees and has published more than 500 research contributions in medicine and engineering journals toward the advancement of science and engineering in medicine. He has delivered over 500 invited keynote and scientific meeting presentations, lectures as well as he has received numerous honors and awards.

 

Xiao-Wen2

As a world expert in computational genomics, Dr. Xiao develops bioinformatic and statistical tools for use in understanding human diseases, especially in studies of immuno-metabolic response. He focuses on integrative analysis and interpretation of multi-dimensional molecular, cellular, and clinical data of many types of patients, including those with ME / CFS. Dr. Xiao’s expertise will be essential for the interpretation of the massive data sets that will be collected in this project.

Dr. Xiao is assistant professor of Bioinformatics at Harvard Medical School and director of the Inflammation & Metabolism Computational Center at Massachusetts General Hospital. He also leads a Computational Genomics Group at Stanford Genome Technology Center. He holds a doctorate degree in chemistry and structural biology from University of California at Berkeley and a master’s degree in statistics.

 

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo