Grabbing XMRV by the Cojones
Mea culpa! Having posted re: Oprah, a New Yorker article, and AZT I guess you can figure out which way the wind blows for me!
I am ALL for taking as much advantage of the momentum this community has built, to raise awareness of the need for coherent, scientific, evidence-based medicine: both diagnotics and treatment. If any of you have tried body-surfing pre-ME/CFS, you know what I mean. If you don't catch the wave, it takes a LOT of energy to start things again from a standstill, where we have effectively been rooted for decades. With all due respect to the fabulous work coming from Light, U of Pacific, etc, none of them have managed to get the kind of mainstream interest in Me/CFS that XMRV and WPI have.
The vital importance of mainstream attention and momentum for ME/CFS must not be under-estimated. Consider also that - even if XMRV is found not to be
the causal factor in ME/CFS - we have awakened an interest in the med/sci community for biological understanding of ME/CFS (even if, as I earlier noted, we are just tagging along as the ugly sister of XMRV). Further, the
Science team have almost singlehandedly awakened a dawning in the ME/CFS community that we just might have some political clout. Just look at the influx of newbie posters on this blog since October 8th. I'm admittedly surprised at the inference that we shouldn't celebrate
and take advantage of this expansion of this forum's critical mass - and
encourage intelligent, tolerant discourse - including speculation and learning on topics which admittedly might affect us deeply. Whether everyone is interested in all topics is moot. After all, groupthink is what got us into this mess.
I don't even need to know that XMRV is
the cause of ME/CFS. All I first care about is: is this virus in me or my loved ones; is it active; does it cause pathology in the active form; and can it be treated more-or-less safely. I already know I have a persistent opportunistic infection that has given me ME/CFS as well as viral heart disease and stroke symptoms. And I also know that my current treatment is dearly expensive for this opportunistic virus. Like a politician, I'm having to go back to the trough regularly - might this be the XMRV "puppet master" reactivating my other infection? The XMRV finding is the FIRST explanation that makes scientific sense.
My #1 motivation in being active on this forum is to shorten my cycle time from 11 years ago, when I first fell ill, to effective treatment,and getting my family's life back (to the extent that this is possible). For me to make intelligent decisions - if XMRV pans out -requires that I work my way up a bit of a daunting learning curve.
Given how quickly my more serious neuro/cardiac symptoms come on, I would much rather lose face in public (as if that's any different from the ME/CFS rep in the past
), than tank again medically, or even croak. I know I'm not alone in saying that I simply can't afford to be caught flat-footed. My kids are growing up. My life is slipping by. Time is a-ticking.
SO... while we are waiting for XMRV validation results etc, I am using my time as productively as possible. I want to inform myself as well as possible, so I am confident that I can make
my own determination on how robust forthcoming XMRV research is. I want to be able to look at the XMRV work coming down the pipe with a critical, informed eye.
I want to be as educated as possible about potential treatment options, risks, retrovirologists - anything to do with potential diagnosis/treatment of XMRV retrovirus - so that when the gun goes off (and this will probably be an iterative process) I can hit the ground running. Does that mean I'll grab the first treatment available? No bloody way - I want my health back too much to make a snap decision. Hence the homework.
With all due respect, there is a huge difference between being patient and being passive. I couldn't give a hoot what "the public" thinks about ME/CFS, but I DO care that their interest has been piqued. Also, I do care what people who know me think. And for that reason I have only shared the XMRV research with two of my closest friends. If XMRV works out, I may well never go on AZT. But I sure as heck want to know WHY. And that requires that I do a little homework.
The only dissonance I see is the exhortation for members of a blog to wait this out quietly.
As for Judy Mikovits (bless her cotton socks) - she got
way ahead of herself in reporting unpublished data. That's just
not done in scientific circles. I suspect WPI had their knuckles rapped a bit for that, and they are just hunkering down now, takin' care of business.
So yes, let's be patient. But not passive. And let's be a little strategic about how to take advantage of this unexpected (and potentially fleeting gift of media interest.
