XMRV and CFS are once again being splashed across all the major news media this week, though this time it's a big step backward.
The editors of the magazine Science, which published the seminal XMRV paper in October 2009, have issued a request to the paper's authors that they retract the paper, in light of the negative XMRV studies that have been published lately. This news, with a strong negative spin, has been reported in all the major news media, from NPR to the Wall Street Journal to Scientific American, plus in many local papers and news shows and as far away as Australia. Here's a short summary from the New York Times.
Of course, Dr. Mikovitz of the Whittemore-Peterson Institute issued a response. You can read it at the WPI website (click on the two documents posted on May 31, 2011). She once again defends their original research, points out flaws in the contamination theories, and states that this action is premature.
I try to stay away from all the various conspiracy theories that tend to circulate around ME/CFS, but this request from Science is so ludicrous, so premature that it's hard not to think that someone really is out to get us. Most knowledgeable scientists (other than one or two on the fringe) agree that this subject is far from closed and that more research is needed. In fact, a couple of huge, government-sponsored, multi-center studies are in progress right now. Why on earth would anyone try to cut off debate right in the middle of all this? It goes against all principles of scientific study.
Let's just hope that logic and science prevail, so we can get more data and more information before jumping to any conclusions. Unfortunately, though, no matter what happens going forward, the damage has already been done with all of this negative media coverage, and we are once again in the position of defending ourselves and our right to full scientific investigation.
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 missed this story in my online news browsing today. This is such a disappointment. Like you, I'm not a conspiracy theorist (what one person who's angry at me called "a CFS denier" -- he says that my approach of accepting how you are today and moving on from there just plays into the hands of the "CFS deniers"). BUT, this move by Science makes me too wonder if someone isn't out to get us. At least we've got doctors at all the major medical centers fighting for us (from Harvard to Stanford). We will prevail!
ReplyDeleteToni -
ReplyDeleteThat's almost funny - how on earth could anyone read anything negative in your lovely approach to living with chronic illness, when it is helping to bring peace and comfort to so many people around the world? What choice do we have but to accept where we are today? To do otherwise only makes us sicker.
Anyway, I share your optimistic view that we (and science) will prevail! It is just discouraging to be taking a step backward.
Sue
Thanks for sharing Sue. I don't follow much, so I appreciate the news you bring.
ReplyDeletePraying all will come to light soon and we will be treated with the same level of care that others are.
Blessings,
Elaine
Well said! Science was embarrassed from the beginning to publish anything about CFS. Now they want to wash their hands of it before the research has had time to play out.
ReplyDeleteWow, Sue, I haven't heard about this - am going to check out the summary right now!
ReplyDeleteI've been following all this, too. It's frustrating to say the least. There are still so many questions left unanswered that can't be explained by the contamination theory. I hope they'll step back and let the real science play out.
ReplyDeleteThanks for your thoughtful words, Sue. The negative announcement from Science does set us back. However there were some positive abstracts posted from the 15th annual International Retrovirology conference. I hope that helps put us back on track to more research!
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