Open Medicine Foundation®
Leading research. Delivering hope.
ME/CFS and related chronic complex diseases

 

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

 

Think of the worst flu you have ever had, times ten, without end ...

ME/CFS could strike anyone at anytime…
There are no diagnostic tests
There are no FDA-approved treatments
There is no cure

 

“ ... 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)

Symptoms

ME/CFS symptoms may include :

  • Profound fatigue *
  • Post-exertional malaise (worsening of symptoms after exertion) *
  • Unrefreshing sleep *
  • Cognitive impairment/brain fog *
  • Incapacitating migraines & dizziness
  • POTS: Orthostatic intolerance *
  • Widespread pains & chronic infections
  • Other Symptoms may occur: patients may experience about 60 symptoms. Each patient is different.
  • Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease (source NIH/Jason & Richman)

* As identified by the IOM

Socio-Economic Impact

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

* Resources: Centers for Disease Control & Prevention (CDC) and National Academies of Sciences, Engineering, Medicine (formerly known as Institute of Medicine - IOM)

 

OMF Accomplishments since 2012

The End ME/CFS Project

Our Research "The End ME/CFS Project" is modeled after two former success stories that our Scientific Advisory Board Director, Ronald W. Davis, PhD, was instrumental in:

  1. The Human Genome Project, launched by James D. Watson, PhD, member of our ME/CFS Scientific Advisory Board.
  2. The Consortium on Inflammation and Host Response to Injury in Humans, led by Ronald G. Tompkins, MD, ScD, member of our ME/CFS Scientific Advisory Board, and co-director of our ME/CFS Collaborative Research Center at Harvard University Affiliated Hospitals.

A Unique OPEN Model & Approach

  • Prestigious Scientific Advisory Board - 3 Nobel laureates
  • Working Group of 50+ 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: Severely ill ME/CFS Big Data Study (SIPS)

(Ronald W. Davis, PhD, Wenzhong Xiao, PhD, Stanford University)

  • Over 1000 tests per patient, 20 patients
  • Examined: Genome, gene expression, metabolomics, microbiome, cell-free DNA sequencing & quantitation, cytokines, as well as a range of tests typically performed by clinicians
  • Differences observed patients vs controls: Metabolites, microbiomes, cytokines & several clinical test results
  • No significant differences were found for any major DNA viruses between patients and controls using cell-free DNA from the blood
  • SF-36 scores (measure of health status): Worse in ME/CFS than in several other major diseases
  • Genetics: Several candidate genes that may predispose
  • Many results already available on Open Data Platform
  • Ongoing analysis: Results leading to further studies

more information #1

more information #2

 

OMF-funded research: T Cells and Immunology

(Michael Sikora, in collaboration with Mark Davis, PhD and Lars Steinmetz, PhD, Stanford University)

  • Examine role of T cells & immune-related genes
  • Goal: Is ME/CFS an autoimmune disease, infectious disease or both?

more information

OMF-funded research: Extended Big Data Study in Families

(Fereshteh Kenari Jahaniani, PhD, in collaboration with Mike Snyder, PhD, Stanford University)

  • Generating multiple large datasets (genomics, gene expression, metabolomics, proteomics, and cytokines) in a cohort of patients and their families.
  • Goal: Understand what genes cause or contribute to the development of ME/CFS

more information

 

OMF-funded research: Diagnostic & Drug-Screening Technology Development

Four technologies are being developed that could provide a biomarker for ME/CFS. Dr. Davis’ team is dedicated to developing these into inexpensive tests that can be easily used in a doctor’s office.

more information

1. Nanoneedle

(Rahim Esfandyarpour, PhD, in collaboration with Ronald W. Davis, PhD)

  • Validating and further developing the nanoneedle biosensor platform, which has shown promise as a blood-based diagnostic for ME/CFS.

more information

2. Magnetic Levitation Device

(Gozde Durmus, PhD, in collaboration with Ronald W. Davis, PhD)

  • Developing a magnetic levitation device. This device uses a ferrofluid in a glass capillary surrounded by permanent magnets. This generates a density gradient and cells move to their respective densities in the capillary

more information

3. Red Blood Cell Deformability Test

(Mohsen Nemat-Gorgani, PhD, Stanford Univ., Anand Ramasubramanian, PhD, San Jose State Univ. in collaboration with Ronald W. Davis, PhD, Stanford University)

  • Developing a micro-fluidic device that measures blood flow and deformability of red blood cells

more information

4. Mitochondrial Function Test

(Julie Wilhelmy, in Ronald W. Davis’ lab)

  • Seahorse instrument: Measures mitochondrial function
  • Protocol reveals significant differences between activated T cells of patients compared to healthy controls

OMF-funded research: Metabolic Trap

(Robert Phair, PhD, Integrative Bioinformatics, Inc., in collaboration with Ronald W. Davis, PhD, Stanford University Team)

  • Hypothesis: Metabolic pathway in ME/CFS patients stuck in a “trap” in an unhealthy state
  • Using data from Severely ill Patients Big Data Study, Mechanistic computational modeling approach

more information #1

more information #2

 

OMF-funded research: Metabolomics & Genetics Validation Study

(Ronald W. Davis, PhD, Stanford University, Robert K. Naviaux, MD, PhD, University of California, San Diego)

  • Metabolomics: Metabolites (small molecules: sugars, amino acids, lipids) present in cells, blood, urine & stool
  • Study to validate findings of 2016 metabolomics paper
  • 77% of the metabolic pathway abnormalities found in the first study were validated by this follow-up study (publication in process)

more information #1

more information #2

more information #3

OMF-funded research: Hormones, Proteins, Autoantibodies

(Jonas Bergquist, MD, PhD, Uppsala University, Sweden)

  • Validating autoantibody findings
  • Measuring proteins, steroid hormones in plasma & cerebrospinal fluid

more information

OMF-funded research: Analyzing Patient Data Study

Collaboration with ME/CFS specialists

  • Retrospective analysis of clinical tests &
  • test results of 1000’s of patients

more information

 

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