Nature magazine ran a 4-page feature-length article on XMRV and the search for a cause for ME/CFS, including an in-depth interview with Dr. Judy Mikovitz. It's a pretty good article - a clear and well-written explanation of the controversies surrounding XMRV, mostly accurate and even-handed, indicating that CFS is now beginning to garner serious attention in the scientific community.
Just one glaring problem - the article starts by referring to Chronic Fatigue Syndrome (CFS) but then quickly lapses into lazily calling it chronic fatigue (no caps even). Lots of readers have already complained, and the editor responded with an apology and an assurance that he didn't intend to downplay the seriousness of CFS but just thought it would read better that way without a lot of acronyms (you can read all the letters at the end of the article).
Sloppy editing, but otherwise an excellent article and some very good coverage for us. Besides, the sad truth is that most people will not even notice the disparity between calling it CFS and calling it chronic fatigue. At least people are finally talking about it. If you're confused yourself over XMRV, this article provides a pretty good overview.
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.
Interesting article Sue. Thanks for posting it. I think I will send it along to my doc...
ReplyDeleteThat is a great article. A stark contrast to the one just published in The Chicago Tribune.
ReplyDeleteComing from a science background myself I have serious doubts regarding the contamination issue just from a statistics standpoint. If there was cross contamination I would think that both the controls and the ill would show roughly the same rate of infection with the deviation ovelapping making the two groups statistically indistinguishable. Instead we have 70-90% positive in the ill group and 4% positive in the healthy group. How would just the ill samples become contaminated and not the healthy controls? Just doesn't make sense to me.
YES!! That's a great point and one that Dr. Mikovitz has made in her own presentations. You'd think that alone would put the issue to rest.
ReplyDeleteSue
I get frustrated when I see CFS turned into chronic fatigue. There's now an excerpt from my book in an anthology that was just published on mindfulness. I was (and am still excited) about it. But when I looked up how they described me, it said I got a viral infection that has left me chronically fatigued. SIGH...
ReplyDeleteHi XMRV-studies are truly interesting. I live in Sweden and they are doing studies here aswell if XMRV has a connection with CFS.
ReplyDeleteTo another issue Im thinking about trying sodium and betablockers. I started with natrium but it raises my pulse (its the chemical reaction to natrium in the body) so betablocker are a logical step. My bloodpressure is better though.. so I hope I wont react badly to the betablocker. What kind of betablocker do you use?
Hi, Erik -
ReplyDeleteI wrote a blog post explaining about my beta blocker treatment:
http://livewithcfs.blogspot.com/2011/03/treating-mecfs-with-beta-blockers.html
I encourage you to talk to your doctor about it if you think it might help you.
Thanks for telling us about the Swedish study!
Sue
Thanks so for the information. I definintely want to read it when I feel better so I bookmarked it.
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