You've probably already heard about this, but just in case...
Yesterday, the results of a recent CFS study were announced that found a certain virus in 67% of 101 CFS patients tested (and less than 4% of controls). This is good news and could potentially lead to some breakthroughs in diagnosis and treatment.
Whether this research leads to anything useful or not, though, the announcement itself was very beneficial - it was covered by all the major news media - big-time coverage proclaiming that CFS has an infectious link and is a real, serious disease! It was covered by NPR (twice - on All Things Considered last night and again on Morning Edition today), by the New York Times, Nature magazine, Science magazine, and many more. Here's the CFIDS Association's take on it. We can use all the good, validating PR we can get!
Coincidentally, the CFIDS Association kicked off a new PR campaign this week called Solve CFS, with some very cool features, including a campaign to raise $1 million for CFS research by 12/21/09. Check out the moving story posted by fellow blogger Jennie Spotilla in this month's CFIDS Chronicle.
I think we're making progress!
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.
Most shared story on the BBC news website today. This illness effects a lot of people.
ReplyDeleteLet's hope this really is progress. Fingers crossed.
Some of the news stories include interviews with the author after she published the piece saying 67% tested positive for the virus. She says they've now found that 95% of people with CFS test positive. Wow. I sent the information to my doctor and he wrote back asking if I knew of any studies using antiretroviral therapy in people with CFS. I don't, but I'll be searching the web today!
ReplyDeleteHi Sue
ReplyDeleteI did see all the reports when I got my google alert for CFS...it is good news ~ really good news to have all the publicity, while at the same time I confess it annoys me that it cannot be real until a blood test shows it is real...sigh...STILL we will take what we can get as it opens the door for the possiblity of a cure some day!
Hello! I found your blog through a google search and thought we could be blog-friends. I'm also a CFS-patient and I'm kind of at my wit's end. My blog is http://otherdumbquestions.blogspot.com/. Thanks!
ReplyDelete~Robyn
Hi Sue, and thank you so much for linking to my story - and for sharing yours! Our stories are powerful, and I believe that telling them makes a difference.
ReplyDeletePlease review an article by Dr. Zoltan Rona,MD, MSc.
ReplyDeleteThe article is worth reading many times, as it is somewhat technical but provides an insightful medical and practical overview to many diseases and conditions. The article provides a treatment plan that few other MDs have articulated as thoroughly and with as much empathy. The article does discuss debilitating fatigue, as well as CFS (the syndrome). It's called, Altered Immunity & The Leaky Gut Syndrome » By Dr Zoltan P Rona MD, MSc. It's the only thing that has helped me put the pieces together. I also take probiotics, supplements to boost my adrenal glands, L-Glutamine to help my digestive system repair itself, and I am careful to avoid all foods Dr. Zoltan says to avoid. Antibiotics and a diet high in yeast, gluten and dairy were key factors in my developing severe fatigue that lasted for weeks at a time. My new diet (& avoiding all pharmaceuticals when possible) is now key: I eat nuts (dry roasted with some peanut oil in my case), bananas, and spinach daily. In general, all food gave me severe congestion; severe fatigue, and brain fog, that dissipated after 1 year. I'm almost back to normal.