Open Medicine Foundation asked our community to share photos and short bios that capture the reality of life with this complex and devastating disease. Persons with severe ME/CFS are often so ill that they are bedbound for 24 hours a day, confined to one room for years on end.
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Since our inception in 2012, Open Medicine Foundation (OMF) has raised over $30 million to fund open and collaborative research and improve health care for millions suffering with chronic, complex diseases such as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Long COVID, Post-Treatment Lyme Disease, and Fibromyalgia. We have facilitated and funded the establishment of six research centers across the globe dedicated to diagnosing, treating, and ultimately preventing these related chronic, complex diseases.
Open Medicine Foundation is a US based global nonprofit, with an affiliate organization in Canada (OMF Canada) and a foreign branch in Australia (OMF Australia Ltd). Our 19 member Scientific Advisory Board is world renowned and includes two Nobel laureates and six National Academy of Sciences members.
Ronald W. Davis, PhD
Director
Innovative, collaborative, multi-disciplinary research
Ronald G. Tompkins, MD, ScD
Director
Clinical and scientific mechanistic studies towards discovering new treatments
Jonas Bergquist, MD, PhD
Director
Research for biomarkers in body and brain
Alain Moreau, PhD
Director
Clinical and scientific intervention studies
Chris Armstrong, PhD
Director
Precision research program
Wenzhong Xiao, PhD
Director
From data to disease mechanism and treatments
The current COVID-19 pandemic offers an unprecedented opportunity to understand how a viral infection may convert to ME/CFS in some patients.
The six ME/CFS Collaborative Research Centers have begun a unique, extensive, in-depth longitudinal molecular study following COVID-19 patients. Their shared goal is to determine the pathways involved in maintaining long-term symptoms in some patients, possibly converting to ME/CFS. They seek to learn about these pathways so as to develop biomarkers, novel drug targets, new treatment, and prevention strategies.
19 world-renowned scientists
2 Nobel laureates
6 National Academy
of Sciences members
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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 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