So, here's the scoop...
- An excellent, comprehensive summary of the discussion of XMRV at last week's CFSAC meeting from Cort Johnson's blog. This is one of Cort's (from Phoenix Rising) best talents - summarizing complex information in an easy-to-understand way.
- Videos from the CFSAC meeting from YouTube. I haven't had time or energy to watch all of these (which is why I was so grateful for Cort's summary, above), but the ones I've seen are amazing, especially this one showing testimony from Dr. Friedman. More videos are available in the sidebar on the right on that page.
- Interim XMRV Guidelines from the National Cancer Institute, as posted on Facebook by the CFIDS Association, addressing transmission and the blood supply. I'm guessing you have to sign into Facebook and maybe be a fan of CFIDS Association in order to read this, but I couldn't find another copy on the internet. Let me know if you have problems accessing this.
- Whittemore Peterson Institute's announcement of a new test available for XMRV from VIP Diagnostics.
- from the UK, a letter from the ME Association to the Chief Medical Officer of the Department of Health about XMRV.
Wow, Sue what an accomplishment to collect all this important and exciting CFS info.... when you have been feeling lousy. My brain goes all mushy just thinking about the cognitive energy it took. Thank you!
ReplyDeleteCongrats on making it to the recliner...hope your son graduates from the sofa soon as well.
Thanks for taking the time to gather all this information. We still have a long way to go. In an appointment on Friday with a dermatologist who is treating me for a rare and (thankfully) non-fatal skin lymphoma, when I tried to raise a possible connection between CFS and XMRV, she told me it had been proven that XMRV was just a marker and not a cause of CFS. Given what the National Cancer Institute (and others) are saying (that we don't yet know if XMRV is a cause), I have to think she was just making this study up so that I wouldn't "pollute" her dermatology practice with CFS. As Dr. Nancy Klimas recently said (quoting Rodney Dangerfield): "We don't get no respect."
ReplyDeleteThere. I've vented. Thanks again for providing this valuable information and...from your lounger. Yay!
Thank you so much for posting this, Sue! I hope your health and energy keep improving.
ReplyDeleteYes, Good Job! I don't know how you manage to keep up with research, do your writing and keep your family going. Just reading all of this info will keep me going nearly all day!
ReplyDeleteThank you so much.
Thanks!! And Toni, your dermatologist's comment...wow, she knows more than all of the other researchers combined:-)
ReplyDeleteSue
ReplyDeleteThanks for putting together all this information for everyone...and while you feel so punk, too. Hope you are right as rain soon!!
Ditto what others have said Sue. Thanks for putting this together!
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