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The first Community Symposium on the Molecular Basis of ME/CFS

On August 12, 2017, the Community Symposium on the Molecular Basis of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) convened ~300 researchers, clinicians, patients, caregivers, families, and advocates at Stanford University – and nearly 3000 more via livestream. Here's what happened.

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  1. There is a debilitating, mysterious disease out there that affects at least 1 million Americans and millions more worldwide. The patients are derided by their families and colleagues, sent for psychological or other misguided treatments by their doctors, and isolated from society because of a disease they know is real: ME/CFS. The plight of these patients is made worse by a lack of funding and knowledge.
  2. But all of that is starting to change, and that's what brought this pretty remarkable team of scientists together at Stanford this month – along with generous support from the Open Medicine Foundation.
  3. To navigate this post, you can jump from here to: science (summaries of the talks and research), take-homes, thank-yous, and resources.
  4. The symposium was chaired by genomics and biotech giant Dr. Ron Davis, Professor of Biochemistry and of Genetics at Stanford University. Ron is Director of: 1) the Stanford Genome Technology Center, 2) the Chronic Fatigue Syndrome Research Center at Stanford University, and 3) the Open Medicine Foundation Scientific Advisory Board.
  5. Recognized as one of the greatest living inventors, Ron is credited with helping to launch the field of recombinant DNA, facilitating the Human Genome Project, and creating technologies that have shaped modern genetics.
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  7. Ron recently changed his research focus to ME/CFS because of his critically ill son Whitney. Whitney has been bedridden and isolated in the back of his parents' home for years.
  8. The story of Whitney's illness and his family's dedication to helping him and the millions of other patients worldwide is detailed in this award-winning piece from Stanford Medicine Magazine:
  9. "The Human Genome Project taught us that we can take on a large project like this and succeed," said Ron as he welcomed participants to the symposium. His approach to ME/CFS research reflects his lessons from the Human Genome Project: think big, try new technologies, and bring together interdisciplinary experts.
  10. I kind of have to point out that there are two Nobel laureates in this picture: Paul Berg (Stanford) and Mario Capecchi (University of Utah; more below).
  11. Just prior to the public Community Symposium, the scientists pictured above spent 2 days in a Collaborative Team Meeting for in-depth presentations and extended discussions on focused topics (see below; check out the participants' bios). We dug into everyone's data, discussed open challenges in the field, and suggested ways to share data and resources.
  12. So much expertise in one room! It was invigorating. We're all brainstorming on more ways to work together – stay tuned for more.

  13. The Science

  14. The week's events were focused on a molecular perspective of ME/CFS. Why is this exciting? Because it means we can study ME/CFS with a powerful array of molecular and omics techniques now reaching maturity, and it means we can look for molecular therapies. In short, a molecular approach opens up the possibilities for this disease as it has for so many others.
  15. With a major issue in ME/CFS being a massive depletion of energy, it stands to reason that mitochondria, the centers of cellular energy metabolism, are a great place to look. Keynote speaker Bob Naviaux from the University of California, San Diego, (pictured below, left) is doing just that, lending his rich expertise in mitochondrial medicine and genetics to this field.
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