Here's a New York Times article published yesterday on the public outcry over holding back publication of the latest XMRV/CFS study. It's actually a very good article for a non-CFS publication! It explains the science, the controversy, and some background very clearly.
The article includes a link to a blog about treating CFS/XMRV with anti-retroviral medications, written by a CFS patient (and doctor) who is treating herself and her daughter, both diagnosed with CFS, with anti-retroviral drugs - apparently with some success. I haven't had a chance to read the blog myself yet but intend to later today - looks fascinating!
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.
Sue, you are remarkable with the amount of information you come across and share. The NY Times had you in mind with their final comment about how intelligent and informed the CFS community is. That blog has me so dang hopeful. Thanks for sharing this wonderful stuff.
ReplyDeleteI was so pleased to see the NY Times writing about CFS again!
ReplyDeleteThanks for letting us know, Sue. You always keep us well informed...
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