On August 12, 2017, the Community Symposium on the Molecular Basis of ME/CFS convened ~300 researchers, clinicians, patients, caregivers, families, and advocates at Stanford University – and nearly 3000 more via livestream. Here’s what happened.
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. 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.
“The Human Genome Project taught us that we can take on a large project like this and succeed,” said Ron. His approach to ME/CFS research reflects his lessons from the Human Genome Project: think big, try new technologies, and bring together interdisciplinary experts.
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. 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.
Ron reminded the audience of the goal behind all of this work. “Our holy grail is a cure, but we’ll take treatment,” he said. “When we see a result, we always ask, ‘what does this mean for treatment?'”
The theme of collaboration was evident throughout. The willingness of researchers to share unpublished data in a public symposium speaks to their dedication to moving the field forward by working together. What was especially exciting to see, as Capecchi noted, is how many researchers in different fields are being drawn to ME/CFS. “This is not a disease that can be solved by one person. It needs a community, and lots of expertise,” said Ron. “I will work with anybody to do this.”The collaborations in ME/CFS extend in a unique way to the patients.
“The patient community has been phenomenal in participating in our research,” said Ron. He noted how valuable partnering with patient organizations, communities, and individuals has been for our efforts in advocacy, fundraising, and research.
For more on the Symposium go to: https://storify.com/raekaaiyar/2017-community-symposium-mecfs
For Cort Johnson’s (patient advocate and author of Health Rising website) summary go to: https://www.healthrising.org/forums/threads/omf-symposium-to-provide-first-look-at-metabolomic-immune-results-in-me-cfs.5521/
If really up for it, follow the live streamed conference below: