Every day, my e-mail inbox and Twitter account are filled with links to various articles, online postings, blog posts, etc. about ME/CFS. They typically fall into three categories: those in mainstream media that do a poor job of describing ME/CFS, those in medical journals that are very technical in nature, and those by and for ME/CFS insiders, like patients and advocates. After a while, it can all feel like the same old thing, over and over.
But today, I clicked a link to an article by Kris Newby in Stanford Medicine, Fall 2014, called Immune System Disruption: The Search for Answers and was truly impressed. Newby has done two remarkable things in her article. She accurately describes what life is like for someone with ME/CFS and what the state of research and lack of funding are for our often-ignored illness. And she also describes some ground-breaking research going on at Stanford that is absolutely stunning and gives me hope for a brighter future.
I'm not sure whether this publication is meant for other scientists and researchers or for the general public or both, but Newby did a great job of balancing the technical information and a picture of the real word for ME/CFS patients.
I know all about Dr. Jose Montoya's work at Stanford in treating ME/CFS with antivirals - he is, after all, one of the few great heroes in our limited world - but I was completely unaware of the the other amazing work going on at Stanford for ME/CFS. Montoya put together an incredible multidisciplinary team to look at all aspects of ME/CFS - genetics, infections, immune system, endocrine system, OI, etc. - and there is groundbreaking work being done there by Dr. Mark Davis, PhD, on the immune system that has the potential to change not just the ME/CFS world but many other illnesses as well. In addition, they have a state of the art laboratory, some very specialized equipment, and extensive private funding.
All in all, I was so impressed by this article that I immediately e-mailed the author to thank her. This kind of update gives me hope. Please click the link to read the full article and share it widely.
P.S. You can follow me on Twitter or "like" my blog's Facebook page to help stay up-to-date.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Thank you! I will be spreading this important article around!
ReplyDeleteGood post, Sue. I am going to re-blog your post.
ReplyDeleteBIG NEWS! Open Medicine Foundation (OMF) and top experts under the guidance of world-renowned geneticist Ronald W. Davis, PhD are launching a bold new project to unlock the mystery of ME/CFS. See the END ME/CFS Project and the remarkable new END ME/CFS Scientific Advisory Board. http://www.openmedicinefoundation.org/
ReplyDeleteFOLLOW FACEBOOK for the latest updates https://www.facebook.com/OpenMedicineFoundation?fref=nf
or TWITTER https://twitter.com/search?q=open%20medicine%20foundation&src=typd
I wrote about OMF's wonderful new research initiative in another recent blog post, with links for more info and for donating:
Deletehttp://livewithcfs.blogspot.com/2014/10/giant-mecfs-research-project-launched.html