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

May 2016 Newsletter

OpenMedicine Foundation(OMF)
>$5 million raised since 2012 
Update and more…
 
Amazing New Research Project Begins
Momentum Continuing- $400K received
With a $400K extremely generous gift, many recent large and small donations, and the Superhero challenge by our friends in the UK and Australia, we’ve added about $1 million to our research capability just within the last month. To say the momentum is continuing is an understatement. We’re speeding it up. Thank you so much for supporting ME/CFS research!

 

OMF’s ME/CFS Severely Ill-BIG DATA study sample collection just about completed
We could not have done this study without the tremendous sacrifice of the severely ill patients and brave controls that gave at least 4 hours of their time, lots of blood and body fluids and patience. We know that it was not easy, and we appreciate your gift to science and to research.
Thank you to our real heros! 

 

Announcing the Expanded ME/CFS Metabolomics Study
Now that the Severely Ill-BIG DATA Study is fully underway, we want to perform multiple investigations at the same time. Because of the many recent small and large donations, we can start another research project now without waiting.
 
We are very excited to announce an amazing new collaboration with Dr. Robert Naviaux and our very own Dr. Ronald Davis, director of our ME/CFS Scientific Advisory Board. As previously announced, Dr. Naviaux (of the University of California, San Diego School of Medicine) joined our Advisory Board and brings remarkable knowledge in metabolomics and mitochondria. 
In addition to Dr. Naviaux and Dr. Davis, the new study is being conducted in collaboration with Dr. Paul Cheney and Dr. Eric Gordon’s team. Dr. Davis will correlate the metabolic findings with genetic results.  

 

What is Metabolomics: Simply put, it’s the study of metabolites, which are chemicals produced as cells carry out their functions. When you know what a body’s cells are producing, you can find out how the cells are functioning, whether normally or abnormally. And if it’s not functioning normally, you can see what aspect of the cells’ activities are defective by measuring the metabolites.
See more details below written by Robert K. Naviaux, MD, PhD.
 
Metabolomics and Chronic Fatigue Syndrome—Testing an Exciting New Technology for Diagnosis and Management for ME/CFS and other illnesses.

 

The Expanded ME/CFS Metabolomics Study
We are excited to work with the Open Medicine Foundation (OMF) to help blaze a new trail in ME/CFS research. Dr. Robert Naviaux and his team at the University of California, San Diego recently completed a metabolomics study of over 80 patients with ME/CFS and normal controls in collaboration with Dr. Eric Gordon and his team in northern California.
The results were so exciting that we have expanded our pursuit and have launched a validation study in a completely independent group of over 100 ME/CFS patients (already chosen and ready to go) and controls from across the US and Canada. This study will be done in collaboration with Dr. Paul Cheney and Dr. Gordon’s team. A grant from OMF will make this new study possible. 
 
If the results of the first study are validated in the new study, then both patients and physicians will benefit. The practical application of metabolomics as a research tool in medicine is happening now.  
OMF is leading the way to new hope for every patient with complex chronic diseases by collaborating with world-renowned, creative scientists to help search for the molecular causes that underlie the myriad of diverse symptoms. Progress is being made on many fronts. In just a year from now, we should have the science to add NextGen metabolomics to the tool kit needed to crack the mystery of ME/CFS.

 

Mitochondria
“Mitochondria” is not quite a household word, but when it comes to understanding complex chronic diseases, it should be. Mitochondria are the hub of the wheel of metabolism. 
More than 90% of the pathways that break down food into building blocks and 70% of the pathways that make new building blocks have at least one reaction that passes through mitochondria. These little bioreactors use the oxygen we breathe to turn food and drink into energy and to perform over 500 other important chemical reactions in the cell.
Mitochondria also have another key function: They stand guard over the cell, ready to defend it when things go wrong. When a virus attacks, or a toxin is detected, mitochondria stop what they were doing, change their shape and cellular locations, and take up arms to help defend the cell. Mitochondria then send messages in the form of metabolites to the nucleus of the cell and to neighboring cells to signal the danger so gene expression can be changed and neighboring cells can prepare for battle. Different signals are sent when the danger has passed to alert the cell that healing can proceed.
Recent scientific discoveries in our lab have shown that several different chronic complex diseases can result when this “cell danger response” (CDR) gets stuck in the “on” position for too long. When the CDR gets stuck, normal healing can’t proceed. If this happens, it could theoretically lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). 

 

Metabolomics
Metabolomics is one of the hottest rising stars in the high tech race to gain a molecular understanding of health and disease. Metabolomics uses a machine called a “mass spectrometer” to measure hundreds of chemicals in our blood. 
In our lab, at University of California San Diego, with a single blood specimen, we can measure over 500 of these chemicals from over 60 different biochemical pathways.
These chemicals are the building blocks that cells use to grow and function, to fight and to heal. Like a Hubble telescope for medicine, metabolomics is allowing us to see deeper and with greater clarity into the universe of the cell than has ever been possible before. In a drop of blood, we can “eavesdrop” on the collective conversations of all the cells in the body. 
In ME/CFS, as in many complex chronic diseases, many genes interact with many environmental factors encountered at times of vulnerability. Complex diseases are not predestined by our genes alone. Complex diseases are ecogenetic—resulting from the interaction of genes inherited from our ancestors, and environmental factors we encounter in a lifetime. Our metabolism is the real-time readout of the gene-environment interaction. Metabolomics is a new lens that allows us to “see” this inner world of the cell in a new way that lends itself to scientific discovery.
This new vision is leading to breakthroughs in our understanding of why patients with ME/CFS get stuck in a cycle of pain and suffering and disability. But more importantly, metabolomics is also shedding light on how rational therapies designed to trigger a return to health might be just around the corner.

 

Our website is now multilingual
 
Undies on the Outside brings in over $12,000!
Our support comes in many ways: big, medium and small donations; and big, medium and small efforts; and here, there and all over the globe. A few patients in Australia had an idea for a fundraiser: challenge people to wear their underwear on the outside, like superheroes do.
The challenge is successful with over $12,000 brought in so far. Even some widely respected researchers have taken the challenge, as in three who serve on our ME/CFS Scientific Advisory Board: Dr. Ron Davis, Dr. Craig Heller and Dr. Wenzhong Xiao.
Kate Booker tells how she came up with the idea and why she chose our foundation’s research to benefit from the challenge. Have you shown your undies—that is your inner superhero—today? See how to participate here.
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OpenMedicine Foundation
Tax ID: 26-4712664
Collaborating to Fast Track Answers
Our Mission:
  • To support collaborative medical research to find effective treatments and diagnostic markers
  • To communicate, engage and inform the patient community.
  • To help drive & support scientific meetings for continued global collaboration.
A Word from our Executive Director:
We are excited to announce this new Metabolomics study that has the possiblity, along with the results of the ME/CFS Severely Ill-BIG DATA study, to lead to possible effective treatments and a diagnostic tool kit.
We are extremely grateful to our supporters and donors, members of our scientific advisory and foundation boards, and our volunteers who are making this urgent research a reality. Our plan is to be open with results, share the data, collaborate and encourage research on a global scale. Thank you all for reading our newsletter and being a part of the solution. 
 
With hope,
Linda
Linda Tannenbaum, Executive Director
OpenMedicine Foundation
Linda@OpenMedicineFoundation.org
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May Awareness Newsletter
2016 
>$5 million raised since 2012
Director
Ronald W. Davis, PhD
Genetics & Biochemistry
Genome Technology Center
Stanford University 
 
David S. Bell, MD 
ME/CFS Pioneer Clinician 
Lyndonville, NY
 
Paul Berg, PhD
Nobel Laureate
Molecular Genetics
Stanford University
 
Mario Capecchi, PhD
Nobel Laureate
Genetics & Immunology
University of Utah
 
Mark M. Davis, PhD
Immunology
Stanford University
 
Craig Heller, PhD
Biology & Exercise Physiology
Stanford University
 
Andreas M. Kogelnik,MD,PhD
Infectious Disease
Open Medicine Institute
Robert K. Naviaux, MD, PhD
Mitochrondria/Metabolism
University of CA, San Diego
 
Baldomero M. Olivera, PhD
Neurobiology
University of Utah
 
Ronald G. Tompkins,MD, ScD
Trauma & Metabolism
Harvard Medical School
 
James D. Watson, PhD
Molecular Genetics
Nobel Laureate
Human Genome Project
 
Wenzhong Xiao, PhD
Computational Genomics
Stanford/Harvard University
 
Linda S.E. Tannenbaum,
Executive Director
Kimberly Hicks, Treasurer
Patricia  J. Linsley, Secretary
R.P. Channing Rodgers, MD
Deborah Rose, MD
Kenneth Walker, MD, PhD
 
Contact Information
Tel 650-242-8669
EIN: 26-4712664