- New York Times Q&A with Dr. Nancy Klimas - and check out the avalanche of comments!
- New Yorker follow-up interview with author Laura Hillenbrand
- Information directly from the Whittemore-Peterson Institute, including Q&A and results of a follow-up study showing XMRV occured in over 95% of the CFS, FM, and atypical MS patients tested.
- Information on XMRV testing, and an update, from CFS Warrior. Tests should be available in 30-45 days.
- XMRV statement from the UK's ME Association
- Statement about XMRV study by Dr. David Bell (Jamie and I have both been to see Dr. Bell; he's a wonderful, dedicated CFS expert)
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.
Thanks for posting those links. I'm so excited that Laura Hillenbrand is finishing a new book. I can't wait to read it!
ReplyDeleteThese are exciting times. Did you see the interview with Dr. Klimas?
NPR is having a retrovirologist on at 2:00 EST to discuss XMRV.
My Dr. prescribed LDN for me. Are you still taking it? Any tips?
I am trying to be cautiously optimistic about this development, but, right now, it really seems like such a big deal, a real 'game changer.' Here's hoping.
ReplyDeleteThese are great links! Thanks, Sue.
ReplyDeleteThanks so much for posting these links, Sue. Dr. Klimas' comments in which she discussed her HIV patients (declaring they are hale and hearty compared to her CFS patients) was stunning. Of course, none of us wants to get into "comparing" levels of disability, but those types of comments do help us to be taken legitimately.
ReplyDeleteI was also excited to hear that Laura Hillenbrand has a new book coming out despite the relapse she had. As you know, my book on living well with chronic illness has been accepted for publication (I'm waiting start the editing process). Reading about how Laura Hillenbrand struggles to write reminds me so much of how I struggled to get the manuscript finished, working too hard on some days and, as a result, not being to do anything on it for weeks at a time.
Thank you so much for all the info and making it available to us!
ReplyDeleteThanks for the great updates & links Sue & feel better!
ReplyDeleteThanks for posting all these!
ReplyDelete