I agree with Wayne that Reeves currently has the most ability to throw a monkey wrench into XMRV research. I also agree that science is going to ultimately sweep aside many of the current players, including Reeves, because a lot of people are going to want to study a new retrovirus. However, in the short run, it will be a bad thing if Reeves publishes a study, using patients who meet the Reeves definition, that finds XMRV in, say, 20 percent of that cohort. (This will be the approximate result if 75% of his sample doesn't have CFS, which is what is suggested by his prevalence numbers, and the 25% who do have CFS have a 67% positivity rate for XMRV). He will then go to the New York Times, etc. and claim WPI is unreliable. This is not insurmountable, but it will take time to straighten this out. I think most of us would like to see the science progress as quickly as possible.
By the way, if you want to see the scientific review process gone awry, check out the review of the original publication of the Reeves' definition. You can find it at the end of the downloadable pdf of the paper (although I hesitate to suggest clicking on the pdf of the paper, because every click gets recorded and used to support the validity of the paper). There was a single reviewer, Tony Komaroff, and no statistical review! The statistical method they used, called, ironically, the Monte Carlo analysis has been mostly used in derivatives trading. Google it. Suzanne Vernon is, unfortunately, a co-author of the Reeves' definition. I think she's a sincere scientist, but, geez Suzanne, you really blew it on this one.
Anyway, what I really want to make sure everyone does is sign Tom Kindlon's petition about the Reeves' definition. Since my guess is that most people on this forum have already signed, I'm hoping you'll get all your friends and relatives to sign, too, if you haven't already done so.
This is the email I sent to anyone I thought might sign. First I said hi and caught them up on my news if I hadn't been in touch for a while, and asked about theirs. Then I said:
By the way, I'm emailing everyone I can think of to see if anyone is willing to sign a petition about the definition of Chronic Fatigue Syndrome (which I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS). It's a pretty esoteric thing to have to have a petition about, but, unfortunately, it's important. Basically, since there's now a lot of data about infectious and other possible causes for CFS, in 2005 Dr. Reeves of the CDC decided to redefine it (CFS) so it would better fit his theory of a psychological cause. Dastardly! Anyway, there's an online petition against the definition. It's a bit of a slog to get through: there's the petition, then there are references, then there's an explanation, then there are a bunch of additional notices, then there's the place where you "sign". They do want your email address, but you can check a box saying you don't want to be notified about any additional related petitions, and I've never been spammed by them to my knowledge. You can also check a box if you don't want your name showing up on the internet. It only takes a couple of minutes.
You may have heard about the new data that suggests that ME/CFS may be caused by a retrovirus called XMRV. Given that a retrovirus was suggested as the cause in the early 90's but rejected by the CDC, a lot of people think this is a good time to discuss why the science has been so bad. Hence, the petition. If you want more information before considering whether or not to sign, call, email or shout loudly and I'll be happy to explain further. If you know anyone else who might be willing to sign it'd be great to pass it along.
Here's the link:
http://bit.ly/nYHy5
If you're able to, please copy & paste, then email this to anyone you can think of. Feel free to alter it, add to it, improve it in any way you can think of, yell at me, whatever. The last time I looked (& I'm embarassed how often I do look) there were about 1750 signatures. It would be great to get to 2000 or beyond. You don't have to be from the U.S. to sign. Tom posted the petition from Ireland. This affects all of us.
Thanks to Cort for providing this forum and to everyone who contributes. I learn so much here.