ComeBackShane, fresh eyes, & Kurt
@ComeBackShane, you hit the nail on the head:
When was the last time you heard of an institution being concerned that they might be left behind when it comes to CFS research? Until now the fear was always that they'd be associated with CFS
@fresh eyes, this was precisely the message of this thread: Serious ME/CFS research at respected Ivy league institution:
serious research is proceeding at multiple institutions. Real science! It's wonderful news
@Kurt, you're quite right that this is
not in any way evidence for or against the validity of XMRV in CFS
I didn't say it was. But I gotta admit, I'm shaking my head that you are being prescriptive of where we should get our XMRV information in general, and that we limit ourselves to two very limited (and potentially biased) sources of information: a) Self-reporting of lab results; and b) Cooperative Diagnostics' info.
If people want to know what is going on with XMRV, look at the survey results for both WPI's and Cooperative's XMRV test, and also read carefully the multiple disclaimers about XMRV testing on the Cooperative website.
I am personally very interested in the short-term lab results posted here. BUT I am also mindful about issues of privacy and self-selection in reporting of these results. There is a lot of research on the flaws of self-reporting. For example in the global warming arena when Canadians are asked what they are willing to do, they are expansive. But when you track their actual behavior, they jump onboard for inexpensive things like better light-bulbs, they defer more costly purchases such as energy-efficient washers, and really haven't adopted off-grid energy generation in any big way. So what people report isn't necessarily the whole picture. Plus the self-reported lab results represent a very small sample size. Very different from if the XMRV results of a million+ ME/CFS patients were being reported. And that might still have a self-selection bias.
Yes, I'm far more interested in published research, but while we wait for these results, I'm avidly reading/sharing the news too, and keeping as up-to-date as possible on new developments. In this way, when I see something posted, such as a suggestion that I go to the Coop website, I can balance this with the testimony of noted retrovirologist Dr Coffin at CFSAC.
"It came to my attention and my horror to see a website identifying an unverified,
Kurt, I think we're actually on the same page about the underlying issue of not believing everything we read.
unstandardized test for XMRV to test a drop of blood. Its a very bad idea."
I DO share your concern that we not jump to premature conclusions. That said, each "forumer" will have a different threshold for and understanding of the significance of XMRV news information, and a different appetite for news updates. And while it may seem reckless to some, I have no hesitation in being VERY optimistic about this XMRV finding. For me, the XMRV discovery represents the most cogent, common-sense possible explanation of my 11-year persistent parvovirus B19 infection that I have yet encountered. I am thrilled that WPI is getting the support of an Ivy league institution. In my mind this virtually guarantees that ME/CFS diagnostic criteria used will allow an apples-to-apples comparison with the original Science
results. I love hearing about other XMRV ME/CFS studies, but the first questions that always pop up in my mind is: Are they using Canadian/Fukuda criteria in patient selection? Are their assays comparable?
I just don't get what seems to be a suggestion to not
comb the newswires for updates on XMRV.
There is a difference between being well-informed and believing everything one reads. But why be on an ME/CFS forum if you don't want others to hear news - particularly in the wake of possibly the biggest discovery ever in the ME/CFS research world? Again, I suspect this is just a difference in semantics. And I'm hoping that what you really meant was, "don't believe everything you read
". Good advice that probably bears repeating.
I'm OK with us respectfully agreeing-to-disagree whether it is premature to be enthusiastic about the XMRV findings. But I do take exception to the inference that we "stop reading/reporting the news
", which just doesn't make sense on a forum, and sounds a bit overbearing.