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

The Harvard ME/CFS Collaboration

at the Harvard Affiliated Hospitals

Clinical and scientific studies to understand Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and discover new treatments.

About the research center

 

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.

Core Aims

Understand

the underlying basis of post-exertional malaise and/or post-muscular stress

Determine

the role of neuroinflammation in ME/CFS

 

Diagnose

possible pathologies associated with ME/CFS patients

Ascertain

the role of circulation and autonomic issues in ME/CFS

Increase

efficiency of clinical visits for ME/CFS patients to significantly reduce wait times

Develop

the infrastructure to begin treatment trials and form a center of excellence for ME/CFS

Fundamental Philosophy

  • Work collaboratively with other groups
  • Use the most advanced technology available to perform the research
  • Explore the research community to find experts in the areas to study
  • Take direct measures from ME/CFS patients to avoid artificial observations
  • Research multiple tissues of the body and consider stark differences of different cell types

View our latest news

An Update on the Mestinon Clinical Trial

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

studies

Scientific Team

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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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 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

heather@omf.ngo