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

POWERED BY OPEN COLLABORATIVE RESEARCH

The End ME/CFS Project encompasses OMF funded and facilitated research conducted within six ME/CFS Collaborative Research Centers (CRCs). OMF’s guiding strategy focuses on open, collaborative research so that precise diagnostic tools and life-changing treatments can be available to people with related chronic complex diseases as soon as possible.

Funding an internationally-based research network instead of single researchers ensures the stability and collaboration essential for an outcomes-focused, transparent, and multi-pronged approach to finding answers

OMF COLLABORATIVE NETWORK

The six CRCs are working collaboratively to build a repository of data about ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid.

This data is essential to develop diagnostic technologies, understand the molecular basis of the diseases,  and uncover effective diagnostic tools and treatments.

ME / CFS Collaborative
Research Center

at Stanford

The Harvard
ME / CFS Collaboration

at Harvard Affiliated Hospitals
Long Covid to ME/CFS Research Plan

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 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.

OMF Funded Research Publications
  1. A Comprehensive Examination of Severely Ill ME/CFS Patients,”  by Ronald W. Davis, PhD and Wenzhong Xiao, PhD, Stanford Collaboration
  2. Theory: Treatments for Prolonged ICU Patients May Provide New Therapeutic Avenues for ME/CFS, by Jonas Bergquist, MD, PhD, Uppsala Collaboration
  3. Insights from Invasive Cardiopulmonary Exercise Testing by David Systrom, MD, Harvard Collaboration
  4. Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie ME/CFS by Jonas Bergquist, MD, PhD, Uppsala Collaboration
  5. Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology by Alain Moreau, PhD, Montreal Collaboration
  6. The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS by Robert D. Phair, PhD and Ron Davis, PhD, Stanford Collaboration
  7. A Nanoelectronics-blood-based diagnostic biomarker for ME / CFS by Rahim Esfandyarpour, PhD and Ronald W. Davis, PhD, Stanford Collaboration
  8. Red Blood Cell Deformability is diminished in patients with Chronic Fatigue Syndrome, by Anand Ramasubramanian, PhD and Ronald Davis, PhD, Stanford Collaboration
  9. Metabolic features of chronic fatigue syndrome by Robert Naviaux, MD, PhD, Stanford Collaboration
  10. Microfluidic Point-of-Care Testing: Commercial Landscape and Future Directions by Ronald W. Davis, PhD and Amit K. Saha, Stanford Collaboration
  11. Autoantibodies to beta-adrenergic and muscarinic cholinergic receptors in Myalgic Encephalomyelitis (ME) patients by Jonas Bergquist, Uppsala Collaboration
  12. Phase 1 study to access safety, tolerability, pharmacokinetics, and pharmacodynamics of kynurenine in healthy volunteers, by Jonas Bergquist, 
  13. Acute necrotizing encephalopathy with SARS-CoV-2 RNA confirmed in cerebrospinal fluid by Jonas Bergquist, Uppsala Collaboration
Help us accelerate this urgent research!
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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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 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

heather@omf.ngo