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UPDATE: New Details from Open Medicine Foundation’s End ME/CFS Project

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Open Medicine Foundation (OMF)

End ME/CFS Project

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This is a game-changing initiative to find a cure for ME/CFS, a devastating and life-altering disease that affects more than 2.5 million people in the U.S. alone — Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
This is the first time ever that leading world-class scientists will be putting their minds together to solve this massive problem. The End ME/CFS Project takes a comprehensive research approach based on collaboration, shared results, and analysis of Big Data. Progress made through this game-changing endeavor also has the potential to shed light on other complex diseases with similar symptoms such as Fibromyalgia, Chronic Lyme, and Gulf War Illness.
Help us decode ME/CFS!

A Personal Nightmare

Living with ME/CFS completely devastates one’s life. Patients suffer from a host of symptoms that are chronic, incapacitating, and often last a lifetime. Most patients never regain their pre-disease level of health or functioning, and at least one-quarter of those afflicted have been home- or bed-bound at some point as a result of their illness. The long-term prognosis is uncertain. Compromised immune systems can lead to premature death from heart failure, cancer, and infections.
No cure exists.
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Whitney Dafoe, an award-winning photographer, was pursuing his love of art and travel when his health began to deteriorate at the age of 21.

 

 

 

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Now in his 30s, Whitney has a severe form of ME/CFS. He is completely bedridden and has lost the ability to speak or communicate, to eat, to tolerate any human contact. In the fight for his life, Whitney is slowly, and agonizingly, wasting away.

 

 

 

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What a twist of fate that Whitney’s father is world-renowned geneticist Ronald W. Davis, PhD, Director of the Stanford Genome Technology Center. Dr. Davis is considered one of the fathers of the modern era of human genetics. He is also among the millions of ME/CFS family members living with the devastating effects of this widespread and widely misunderstood disease, grasping for hope and searching for answers.

 

 

 


A Historic Venture

omf-2Little to nothing is known about ME/CFS. Dr. Davis and many of his colleagues believe the key lies hidden deep inside the cellular and molecular signatures of the disease. Dr. Davis has joined Open Medicine Foundation (OMF) as Director of the Scientific Advisory Board in order to find answers.
To understand this debilitating disease, a new approach is needed and Open Medicine Foundation will lead the way.
For the first time in the history of this disease, a comprehensive, “Big Data,” analysis will be performed on severely ill ME/CFS patients with the goal of finding sensitive and distinctive molecular biomarker(s).

Directed by Dr. Davis and a remarkable scientific advisory board that includes three Nobel Laureates and six members of the National Academy of Sciences, the End ME/CFS Project aims to:

  1. Understand the disease at a molecular level.
  2. Find biomarkers that can be used for patient-centered outcomes.
  3. Identify diagnostic tools, effective treatments towards a cure, and prevention.
  4. Provide a data-driven model of understanding, diagnosis, and personalized treatment.
  5. Share progress widely and frequently with the scientific, medical, and patient communities.

What makes this a historic venture is the caliber of scientists that have been brought together to work in open collaboration to crack this illness. Modeled after the Human Genome Project—perhaps the most groundbreaking project in medicine in the last 15 years—and the Consortium on Inflammation and Host Response to Injury in Humans (NIH GlueGrant Project), world-renowned experts in a wide range of disciplines are engaged with this novel research approach. Open information sharing and a lean start-up business model will fast-track research and solutions.

First Initiative: Big Data Biomarker Discovery

Currently, ME/CFS can only be diagnosed based on symptoms. The first research study of the End ME/CFS Project is a biomarker discovery big data project, which seeks hard biological evidence for diagnosis and measurements towards targeted treatments and prevention. The initial patient population will be the most severely affected, bedbound patients like Whitney, who are likely to show the strongest molecular signal. By taking easily collected biofluid samples and comparing them to samples from healthy people as well as from people with related diseases, researchers aim to uncover distinctive biomarkers of ME/CFS.

Significant inroads in the diagnosis and management of many complex diseases, such as cancer, have been made using Big Data, which promises to have similar impact on ME/CFS. The Big Data set will be open and released to the scientific community to accelerate the rate of research on ME/CFS.


Public Health Crisis of an “Invisible” Illness

According to the recent Institute of Medicine report, up to 2.5 million Americans have ME/CFS. And this is just the tip of the iceberg; an estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed. “It’s likely to be present in one percent of the population globally,” says Dr. Davis.

Most health care providers know little about how to diagnose and treat ME/CFS. Many are skeptical about the seriousness of ME/CFS or dismissive of the patients’ symptoms. These misconceptions and lack of knowledge lead patients on a long, frustrating, and expensive path to diagnosis.

The costs of this disease extend far beyond the patients. Spouses, parents, and other caregivers put their lives on hold to care for their loved ones. The emotional and financial toll can be devastating. All told, the total economic costs of ME/CFS are estimated at $17 to $24 billion annually.

Yet, given the number of people afflicted by ME/CFS, remarkably little funding has been allocated by the National Institutes of Health (NIH). The NIH spends an average of just $2 per patient per year in research dollars, a fraction of the amount allocated to diseases affecting far fewer people.
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Let’s End ME/CFS

Open Medicine Foundation has taken on the challenge of filling the gap to fight this underfunded and under-researched devastating disease. To advance such an ambitious scientific endeavor, the End ME/CFS Project will require a major financial investment from the private sector. We seek significant contributions from philanthropic individuals, corporations, and foundations to raise $5 million annually for this urgent research.
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omf-5With your support, the best minds in their fields will come together in collaboration and groundbreaking research to understand ME/CFS. Be part of this unique effort and spread hope to millions of patients worldwide!
Join our TEAM of HOPE!

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All images and text originally published by the Open Medicine Foundation, re-posted with permission.

Categories: All News, Research, Uncategorized

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One comment on “UPDATE: New Details from Open Medicine Foundation’s End ME/CFS Project
  1. Nanci Haehnel says:

    I just came across this site and have asked my Facebook friends to share the information here. I’m mostly bed-bound and run a fever daily. Took me almost three years to find a diagnosis and a doctor who was familliar with the illness. Had to close my business of 25 years and am about to exhaust my savings, while I wait to see if my appeal for disability will even be heard. Every day is painful – I really hope this group can find, if not a cure, at least a real treatment.

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