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The END ME/CFS Project

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Open Medicine Foundation (OMF) and top experts under the guidance of world-renowned geneticist Ronald W. Davis, PhD are launching a bold new project of collaborative research. The ultimate goal is to unlock the mystery of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
 
“I really enjoy working on problems that others think are unsolvable, and I’ve been finding, to my surprise, that the older I get, the easier it is to take on those problems”, says Ronald W. Davis, PhD, OMF Scientific Advisory Board Director.
 
OMF’s new END ME/CFS Project will create a large consortium of scientists and clinicians with expertise in ME/CFS and top-notch experts in relevant scientific fields and will also include world-class scientists not currently working on this disease.
 
It will be modeled after two former success stories:

  • The Human Genome Project, launched by James D. Watson, PhD (who has joined our Scientific Advisory Board).

  • The Consortium on Inflammation and Host Response to Injury in Humans (gluegrant.org), led by Ronald G. Tompkins, MD, ScD (who has also joined).

The project will find grants and funding, and determine the most effective course of research. The goal is to understand the disease at a molecular level, finding diagnostic markers, effective treatments, cure and prevention. Basic research will be conducted in the best scientific laboratories. ME/CFS clinicians will provide their intimate knowledge of the disease and conduct any clinical trials. We will work until answers are found.
 
World-renowned Scientists
 
The Open Medicine Foundation is honored to announce that Dr. Ronald W. Davis will join the OMF as its new ME/CFS Scientific Advisory Board Director. Dr. Davis is Professor of Biochemistry and Genetics at Stanford University and Director of the Stanford Genome Technology Center. The originator of numerous innovations in genetics technology, molecular instrumentation, Dr. Davis is known as one of the “fathers of the modern era of human genetics”. He was a key scientist in the Human Genome Project, perhaps the most groundbreaking project in medicine in the last 15 years. His pioneering and collaborative work has gained Dr. Davis the respect of scientists and clinicians worldwide.
 
Other remarkable scientists who will join Dr. Davis on the Scientific Advisory Board include:

  • Mario Capecchi, PhD – Nobel Prize Laureate, currently working on molecular genetic causes underlying human disorders involving the immune system and the brain;

  • Mark M. Davis, PhD – renowned immunologist;

  • H. Craig Heller, PhD – sports fatigue expert with broad knowledge of physiology;

  • Andreas M. Kogelnik, MD, PhD –  prominent ME/CFS clinician-scientist;

  • Baldomero M. Olivera, PhD – innovative neurobiologist;

  • Ronald G. Tompkins, MD, ScD – prestigious trauma physician;

  • James D. Watson, PhD – Nobel Prize Laureate for his determination of the structure of DNA

A few additional top scientists are yet to be recruited. Together, they will recruit a large consortium of leading researchers and clinicians including many already involved in ME/CFS. This collaboration will bring in expertise in a wide range of body systems and a diversity of disciplines including medicine, genetics, biochemistry, immunology, infectious disease, neurophysiology, bioinformatics, and statistics.
 
Producing a Breakthrough
 
The END ME/CFS Project was founded on the idea that a comprehensive, interdisciplinary effort is needed to produce breakthroughs in our understanding of ME/CFS and neuro-immune diseases. The OMF’s goal is to connect the best experts, from inside and outside the field, through openness and information sharing.
 
Linda Tannenbaum, Executive Director of the OMF, and Ronald W. Davis, PhD also have a personal goal to find answers as quickly as possible as they have a daughter and a son,  respectively, suffering from ME/CFS. Personal dedication can be a powerful force for making breakthroughs in difficult to understand diseases.
 
The Scientific Advisory Board under the guidance of Dr. Davis will lead the consortium in a collaborative manner to move research as fast as possible in the least expensive and most systematic manner. At their first meeting they will draw up a comprehensive list of doctors and scientists to join the consortium.

Five million Dollars
 
OMF is setting an initial minimum goal of $5 million per year for the “End ME/CFS” project. To join in this campaign to End ME/CFS and Donate to the Open Medicine Foundation, please go today to OMF to donate or contact us at donate@openmedicinefoundation.org. Ask your friends, your family and your peers to donate to this ground-breaking project that will be a catalyst to the understanding of all Neuro-Immune Diseases.
 
Be part of this historic effort to unlock the mystery to find a cure and share the hope of millions of patients worldwide!

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2 thoughts on “The END ME/CFS Project”

  1. vlboyle1945 says:

    My 46 year old daughter has had health issues since about age 4. It began with upper respiratory problems and she caught everything that went around the schools. At 18 she had thyroid cancer; having her thyroid, 2 lymph glands, and some muscle tissue removed. She’s had sinus surgery, several foot surgeries, and her gall bladder removed. She has arthritis in her ankles and in facets of her lumbar spine. She also has malformed feet and can only wear slip in slippers, no shoes. No shoes no job, so in 2011 she had to leave her job.
    She has been diagnosed with FM and CRPS and suffers every day, Walking is torture, can’t sleep, nausea, cold hands and feet, sore throat, and continuous unrelenting fatique.
    I hope the result of this study can give my daughter some relief from all her pain.

  2. LivinGoodLife says:

    I have been living with CFS since 2006 and have been searching scientific studies to find information which can help. I the last few years studies have begun to yield information which I believe show some of the mechanisms of the disease and it all relates to inflammation which has gone too far. The source of the inflammation can differ. It could be viral, such as H1N1 or Ebola, or it could be a form of trauma such as traumatic brain injury or stroke, or it could be something else.
    Whatever the original cause, with inflammation cell membranes are damaged and enough mitochondria are also damaged. With the inflammation the protective immune cells at the blood brain barrier are drawn away an the brain becomes inflamed yielding the common symptom of brain fog. Some studies indicate that nutrition which promotes healing of the cell membranes such as omega 3 and phosphatidyl choline (sunflower lecithin) and curcumin can be helpful.
    Also helpful are supplements which promote mitochondrial function and regeneration, such as ubiquinol and ribose. Sam-e, which is adenosine triphosphate and methionine, is known to help depression, may be helpful as ATP is important in the energy generating Kreb’s cycle. Creatine monohydrate facilitates ATP regeneration. Ribose is a building block of RNA. I Also find it helps.
    Antioxidants such as vitamin c and e are also important. Personally I use an isotonic form of OPC3, which has pycogenol and other potent antioxidants. Isotonix OPC3 also helps nitric oxide which causes blood vessel dilation and improves circulation.
    Vitamin Bs are also important. Minerals, especially magnesium and zinc. I take a multi mineral which provides vitamin D and K as well as trace mineral, Bone Up by Jarrow. In the early evening I add magnesium in the chelated glycinate and theonate forms as they are better absorbed and do not have the GI problems of the other magnesium forms.
    Glutamine helps many things, such as the GI and neurotransmitters and muscles. Branch chain amino acids also help muscle recovery.
    Also helpful are taking probiotics and eating an anti inflammatory diet, even paleo, or using digestive enzymes (Rainbow Light has a good multi enzyme product) or using one of those specialized high power blenders for retaining the enzymes in whole raw fruits vegetables and seeds. Ginger root is very helpful.
    Astralagus and schisandra helps with the adrenal glands.
    I hope that aids someone else out there searching for answers as I continue to do. Recently I suffered an embolitic stroke. The doctors could not find the reason. My labs were normal, blood pressure ok, arteries and heart clear, no a fib, and being in my low 50s my risk for stroke should be low. Personally I think it probably relates to my genetic age being higher due to the inflammation. Those poor telomeres are probably pretty frayed. Interestingly, many of the recommendations for traumatic brain injury are duplicates of what i had already found helpful for my CFS.

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