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

Core Aims

What we hope to achieve

Philosophy

Our fundamental philosophy

Science Team

List of scientific collaborators

Research

Current research projects

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. 

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Core Aims

Fundamental Philosophy

The Research

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 Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) patients. 

Current Studies

Heart Preload Failure

Heart Preload Failure STUDY AIM This study aims to evaluate these different explanations of PLF in ME / CFS patients to determine which is active in many, …

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Mestinon Clinical Trial

Open Medicine Foundation is delighted to announce its support of a clinical trial to test the exercise response to Mestinon in people with Myalgic Encephalomyelitis / Chronic …

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Skeletal Muscle Dysfunction

Skeletal Muscle Dysfunction Research Study AIM This project aims to explore the biological changes that occur in the muscles during Post-exertional Malaise (PEM). LEAD INVESTIGATORS …

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Personalized Automated Symptom Summary (PASS)​

Personalized Automated Symptom Summary (PASS) Using Computerized Adaptive Testing (CAT) TECHNOLOGY AIM Given meager research funding and the absence of a consensus on disease mechanism, …

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Multi-omics Exercise Intolerance

Multi-omics of iCPET Plasma Samples Study AIM This project aims to understand the origin of postural orthostatic tachycardia syndrome (POTS). LEAD INVESTIGATORS Ronald Tompkins, MD …

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Scientific Team

To carry out these ambitious collaborations, Drs. Tompkins and Xiao together with the many Harvard Medical School faculty are establishing networks and collaborations extending to the UK and other US-based institutions. They have assembled a team of superb clinicians and scientists with expertise in a wide variety of areas directly relevant to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) research. 

Massachusetts General Hospital

Ronald Tompkins, MD, ScD

Wenzhong Xiao, PhD

Donna Felsenstein, MD

Jonathan Friedstat, MD

Daniel Irimia, MD, PhD

Amel Karaa, MD

Michael VanElzakker, PhD

H. Shaw Warren, MD

Yongming Yu, MD, PhD

Andrew Alexander, MBA

Brigham & Womens Hospital

David Systrom, MD

Anthony Komaroff, MD

 

BI Deaconess Medical Center

Janet Mullington, PhD

 

Pacific Northwest National Laboratory

Richard Smith, PhD

John Jacob, PhD

Wei-Jun Qian, PhD

University of Nottingham, UK

Philip Atherton, PhD

Paul Greenhaff, 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