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

OMF creates new Harvard ME / CFS Collaborative Research Center and expands Stanford Data Center

BIG NEWS on this #OMFScienceWednesday: OMF creates new Harvard ME / CFS Collaborative Research Center and expands Stanford Data Center

ME / CFS Collaborative Research Center at the Harvard:

We are proud to announce that OMF has funded $1.8 million for the establishment of a new ME / CFS Collaborative Research Center at the Harvard Medical School affiliated hospitals, which includes Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center.

The new Harvard Center will be led by OMF Scientific Advisory Board members Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD, of Harvard University and will work synergistically with the ME / CFS Collaborative Research Center at Stanford led by Ronald W. Davis, PhD, of Stanford University, also funded by OMF. All science funded by OMF continues to be under the overall direction of our Scientific Advisory Board, directed by Ron Davis.

The goals for this new Harvard Collaborative Center are twofold. First is a basic research goal: to collect molecular data on muscle and other tissues affected by ME / CFS. Studies will include evaluation of patient muscle biopsies as compared to controls including genomics, proteomics, and ultrastructural analysis. Dr. Tompkins has extensive experience with such analysis on tissue from burn patients. He will be able to perform muscle biopsies, and possibly biopsies of other tissue types, greatly expanding the research, which has so far involved the analysis of blood cells. One focus of this new work will be to investigate the etiology of Post-Exertional Malaise (PEM).

The second goal is to establish a Clinical Trials Network to facilitate multi-center clinical studies on potential effective treatments for ME / CFS. The clinical resources at the MGH under Ron Tompkins, MD, are very extensive, making this an ideal site for overseeing and conducting clinical studies. This is a great opportunity to establish standards and the infrastructure for rigorous clinical trials.

Stanford ME / CFS Data Management and Coordination Center:

OMF is also funding the expansion of the Stanford Data Center for the Severely Ill Patients (SIPS) Study to encompass all the data from the Stanford and Harvard ME / CFS Collaborative Research Centers, as well as data from any other research we are funding.

The clinical results from the SIPS are currently already open to researchers with access via our website. This expanded data center will give researchers quick access to massive amounts of research data.

“These are exciting and important steps forward in our work to end ME / CFS, which we were able to take thanks to the dedication and donations of our many supporters. Thank you all for helping to make this possible and for being our partners in the urgent effort to put an end to this devastating disease.” – Linda Tannenbaum, CEO/President

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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