Friday, July 20, 2018

ME/CFS Research Update - July 2018

Busy around here lately - just back from a whirlwind double-reunion (college and family) trip to New York state - but I am trying to post research updates more frequently so that I don't just leave a bunch of open tabs in my browser for weeks!

Research news the past few weeks brings a lot of hope for a better future for ME/CFS patients! A few highlights:
  • Possible ME/CFS Diagnostic Test with 84% Accuracy - This is HUGE news out of Columbia University (which has done other ground-breaking ME/CFS research in the past). Studying 50 ME/CFS patients and 50 controls, researchers found 562 metabolites (byproducts of metabolism) that the ME/CFS patients had in common. Combining these results with those of a previous study, they came up with a predictive model that identified the ME/CFS patients with 84% accuracy (that's far better than Lyme testing currently!). Not only do we desperately need a diagnostic test for this disease (population studies estimate that at least 85% of patients are not diagnosed), but this study also adds to the body of knowledge as scientists come to understand our complicated condition better and better. You can read the details of this study here (an article in layman's terms).
  • Testing the Microbiome Hypothesis - Also out of Columbia University, Dr. Ian Lipkin (a renowned virologist who has devoted his work to untangling the mysteries of ME/CFS) is testing his theory that the root cause of ME/CFS is in the gut/microbiome. Since ME/CFS is an immune disorder, and much of the immune system is in the GI tract, this theory makes sense. Lipkin's group, The Center for Solutions for ME/CFS, will test this theory as part of a $9.6 million, 5-year research program funded by the National Institutes of Health (NIH). Part 2 of this program will investigate changes in patients' immune systems, using a new technology. This excellent blog post from ME/CFS Research Review  explains all about these two parts of this exciting program. These are the kinds of funds and extensive research that was completely missing from the ME/CFS world just five years ago...look at us now!
  • Stanford Study Looks for the Immunological Basis of ME/CFS - And on the opposite coast of the US, Ron Davis has also received a sizeable NIH grant for an extensive study of the immune system dysfunction at the heart of ME/CFS, using cutting-edge technologies at the Stanford Genome Center. Unraveling the specifics of our immune dysfunction is the key to unlocking the mysteries of our complex disease. Ron Davis is at the center of the ME/CFS research community, and this new NIH grant adds to another $6 million from two other sources for his work earlier this year. Things are definitely looking up for the ME/CFS world! You can read a summary of this planned research and/or watch a video explanation in this article from ProHealth.
  • New ME/CFS Collaborative Research Center at Harvard Medical School - But wait, there's more! As if Columbia and Stanford weren't impressive enough, The Open Medicine Foundation just funded $1.8 million to Harvard Medical School for a research center for ME/CFS, which further builds the growing integrity of our disease in the medical community. The team there will start with a focus on the muscles, building off the previous work of David Systrom of Harvard in exercise testing of ME/CFS patients. The new center will also set up a Clinical Trials Network at Mass General - clinical trials? A dream come true for ME/CFS patients! You can read more about the new center, the researchers, and their projects in this ProHealth article.
LOTS of good news to share on this Friday afternoon - now you can enjoy your weekend, full of hope for a brighter future!

P.S. I've been nominated for a Patient Leader Hero award by WEGO Health! I would greatly appreciate your support. Just click this link and click on the Endorse Sue Jackson button. It only takes a moment, and your vote of confidence will help me move ahead to the finals. Thank you!

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