at the Harvard Affiliated Hospitals
Established in 2018, this research initiative is based at Harvard affiliated hospitals, including Massachusetts General Hospital (MGH), Brigham and Women’s Hospital (BWH), and Beth Israel Deaconess Medical Center (BIDMC).
Including the faculty of the Harvard affiliated hospitals, critical collaborations are represented from Stanford University, Cornell University, University of Birmingham, University of Nottingham, Uppsala University and Pacific Northwest National Laboratory.
This collaborative research center is co-led by Ronald G. Tompkins, MD, ScD and Wenzhong Xiao, PhD. This research collaboration seeks to conduct clinical and basic science studies to characterize the dynamic biological changes that occur during change in symptom expression of ME/CFS patients.
the role of neuroinflammation in ME/CFS
the infrastructure to begin treatment trials and form a center of excellence for ME/CFS
Dr. David Systrom, pulmonary physician at Brigham & Women’s Hospital and investigator at Massachusetts General Hospital in association with the Harvard ME / CFS Collaboration, has recently
From the desk of Ronald Tompkins, MD, ScD Chief Medical Officer, Open Medicine Foundation #TripleGivingTuesday Research News Transforming the Diagnosis and Treatment of ME/CFS, Post-Treatment
From the desk of Ronald G. Tompkins, MD, ScD Co-Director, The Harvard ME / CFS Collaboration Mestinon Trial Update In May, 2020, Open Medicine Foundation (OMF) announced
This study aims to evaluate different explanations of preload failure in ME/CFS patients.
This clinical trial will test the exercise response to Mestinon in people with ME/CFS.
This project aims to explore the biological changes that occur in the muscles during Post-exertional Malaise (PEM).
Researchers are developing a tool to help clinicians more efficiently define the character and priorities of a patient’s current symptoms of ME/CFS, Post-Treatment Lyme Disease, or Fibromyalgia.
This project aims to understand the origin of postural orthostatic tachycardia syndrome (POTS).
Massachusetts General Hospital
Ronald Tompkins, MD, ScD
Wenzhong Xiao, PhD
Donna Felsenstein, MD
Amel Karaa, MD
Michael VanElzakker, PhD
Andrew Alexander, MBA
Peng Li, PhD
Karen Buch, MD
Brigham & Womens Hospital
David Systrom, MD
Anthony Komaroff, MD
BI Deaconess Medical Center
Janet Mullington, PhD
Boston University
Lewis Kazis, ScD
Mary Slavin, PhD
Pengsheng Ni, PhD
Bill Rogers, PhD
Pacific Northwest National Laboratory
Richard Smith, PhD
John Jacob, PhD
Wei-Jun Qian, PhD
Chiari Neurosurgical Center
Paolo Bologenese, MD
Ilene Ruhoy, MD
Center For Healing Neurology
David Koffman, MD
University of Nottingham, UK
Philip Atherton, PhD
Paul Greenhaff, PhD
Daniel Wilkinson, PhD
Mathew Piasecki, PhD
University of Birmingham, UK
Janet Lord, PhD
Cornell University
Maureen Hanson, PhD
Open Medicine Foundation
Linda Tannenbaum
Chris Armstrong, PhD
Stanford University
Ronald Davis, PhD
Uppsala University, Sweden
Jonas Bergquist, MD, PhD
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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 five 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