Open Medicine Foundation®

“Leading research. Delivering hope.”

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS)
A Major Public Health Crisis That Most People Know Nothing About

 


OMF Overview


 

“ ... ME/CFS is a serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of patients.” 1
“In its most severe form, this disease can consume the lives of those whom it afflicts.” 2
– National Academy of Sciences – Institute of Medicine (2015)

 

ME/CFS could strike anyone at any time…
There are NO diagnostic tests
There are NO FDA-approved treatments
There is NO cure

Symptoms

Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease.
(source NIH/Jason & Richman)

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) patients may suffer up to 60 different symptoms and the severity of these symptoms vary between patients.

Some of the more common symptoms may include :

  • Profound fatigue
  • Post-exertional malaise (worsening of symptoms after exertion)
  • Unrefreshing sleep
  • Cognitive impairment
  • Incapacitating migraines & dizziness
  • POTS: Orthostatic intolerance
  • Widespread pains & chronic infections

Socio-Economic Impact

  • 1 to 2.5 million in USA, estimated 20+ million worldwide
  • 75%: Unable to work or attend school
  • 25%: Entirely house-bound
  • 80 to 90%: Not correctly diagnosed
  • Huge socio-economic costs: $17 to 24 billion in USA
  • Chronic Diseases with Overlapping Symptoms: Fibromyalgia, Post Treatment Lyme Disease Syndrome, Multiple Chemical Sensitivity (MCS), Autism, Gulf War Illness, others
  • Under-funded & under-researched: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) & chronic diseases

Resources: ICC, CCC, IOM

 

OMF Accomplishments since 2012

The End ME/CFS Project

Our Research "The End ME/CFS Project" is focused to develop diagnostic tools, deliver treatments, and ultimately find a cure and prevention for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS). The End ME/CFS Project is directed by our stellar Scientific Advisory Board and led by Director, Ronald W. Davis, PhD.

A Unique OPEN Model & Approach

  • Prestigious Scientific Advisory Board - 2 Nobel laureates
  • Working Group of 100+ leading international researchers
  • Dr. Ron Davis, Director Stanford Genome Technology Center & OMF ME/CFS Scientific Advisory Board:“ I think we can cure this illness. We are getting close enough to understanding the mechanism.” “Treating it would be OK, but I want to cure it!”

OMF-FUNDED RESEARCH

Stanford Collaborative Research Center

Led by Ronald W. Davis, Phd, the research projects include:

  • Extended Big Data Studies in Families
  • T Cell and Immunology
  • Severely ill Patient Study
  • Metabolic Trap Study
  • Technology development
    • Mitochondrial Function Test
    • Magnetic Levitation Platform
    • Red Blood Cell Deformability in ME/CFS
    • Nanoneedle Technology
    • Clinical Diagnostic Assay
  • Read about the studies at Stanford here.

Harvard Collaborative Research Activities

Led by Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD,  the research projects include:

Uppsala Collaborative Research Center (Sweden)

 

 

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