The CFIDS Association's Kimberly McClearly has posted an excellent, detailed explanation of the new retrovirus-CFS study that was published yesterday. McClearly describes the study's methods and results in easy-to-understand terms.
I took Craig in for his well visit this morning and was very pleased when his pediatrician said, "Did you read the news yesterday about Murine-Leukemia Viruses and CFS?" Awesome that she had already heard about it (she also asked how I am doing this week - she's amazing!). I gave her a printout of the Wall Street Journal's article from yesterday, and we discussed the implications briefly. Exciting news!
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.
I have friends e-mailing me saying, "Did you see this?" I'm thrilled that there's so much media attention. People are understanding more. Good, good, good!
ReplyDeleteThanks as always, Sue, for keeping us informed. To add to the discussion, here is what my only "CFS expert" contact said when I wrote to him about the new study (he knows I tested negative to XMRV but that I have high titers for HHV-6 even though Valcyte didn't help me):
ReplyDelete"The paper just published found viruses that are cousins to XMRV, but not XMRV itself. So the negative PCR test does not necessarily mean you do not have an infection with one of these mouse retroviruses. I'm afraid it's a confusing time, as laboratories are trying to work together to develop the most accurate tests, and aren't there yet.
I also think it's likely that the symptoms of CFS are due to the interaction of various infectious agents in the brain, and HHV-6 is a prime candidate to interact with a retrovirus.
Hang in there until the scientific dust settles. I think things will be clearer in the next year."
Yes, Shelli - me, too! Isn't it great?
ReplyDeleteThanks for the extra info, Toni. I thought of you being XMRV negative when I read about this study finding not XMRV but close relatives of it!
Sue
Awesome - I love tuned in doctors!
ReplyDeleteThank you Sue for pointing us to this more easily digestible report. I've been a bit confused by it all over the last few days, not least because there has only been, to my knowledge, one report in the UK press.
ReplyDelete