I'm wit u
Adam, you nailed it. Well, you pinned the tail on the (erm) donkey.
Cogent scientific discussions vs predictable drivel from the usual suspects
While there are many, many insightful "devil's advocate" discussions of the pros and cons of forthcoming XMRV and ME/CFS research, there are also the usual suspects, the monotone offenders who drone on and on and on about dead donkeys. What rankles me is that they blissfully ignore facts, spewing their negativity without robust scientific substantiation. When I'm not up to it, I ignore their drivel. But when I'm up to it, I counter with a blitzkrieg of facts! Fortunately, given the massive scientific interest in XMRV, it is easy to find great research on XMRV that has profound bearing on ME/CFS.
But heaven, please spare us the negative and illogical drivel....:Retro smile:
It's one thing to read an intelligently presented argument on the cons of XMRV. But geez, if they keep repeating "
3 negative XMRV studies vs 1 positive", maybe enough people will believe it - even if there are methodological holes large enough in those negative studies to drive a truck through? I find the blithe and slippery indifference to science and facts by the usual suspects reminiscent of small tots, who believe no one can see them when they close their eyes. I do continue to scan the usual suspects' posts, partly because I believe some of them to be intentionally manipulative and subversive of the mood and power on this forum. But also because I do believe it's important from time to time to indulge in some factual biatch-slapping. Set the record straight, as it were with some good ol' facts.
In pursuit of good science - dead donkeys don't belong!
At the end of the day, all we want is science, objective science - and LOTS of it - to uncover the cause(s) of ME/CFS, so we can get treatment and get back to our lives. I take great comfort that I am more confident in the wave of XMRV research, than I am sidetracked by petty and most importantly vacuous arguments for us to lay down our arms and just accept that we're making this all up. It is also abundantly evident that there are some entrenched interests - even beyond CBT/GET - whose noses are WAY out of joint at the limelight that XMRV is getting. I also do believe in trolls on this forum, and am mindful that in the pre-internet age, it was easy to intimidate patients to accept "their lot". No more... we're seeing a massive upswell in genuine scientific enquiry and empowerment, and Adam, this thread is one example of that
Carpe Diem sensibility!
Ridiculous exhortations to stop discussing XMRV
Perhaps the most ridiculous recommendation I've heard from one of the most ludicrous dead-donkey offenders is for us to stop learning about and writing on the XMRV science because it's "too early", and that we are, after all, just misinterpreting the words of the CBT/GET psycholobby. In other words, we should just be passive, not proactive in learning about and accessing upcoming diagnostics and treatment as soon as possible. I for one want to be SHOT out of the cannon when safe treatment is available that "fits" my clinical signs and symptoms. But only if it makes scientific sense. I'll be damned if I listen to this rote negative XMRV tripe, and sit here twiddling my thumbs, when I can be building my knowledge base - and contributing to this community - so that I, we, and indeed the media can make intelligent, fact-based decisions on diagnostics and therapy as soon as they are available. Make no mistake about it - this forum is frequently cited by others on the net as a source of both politics, as well as intelligent discussion of scientific research. So WTF to the dead donkey perseverators - why in heaven's name should we
wait to educate ourselves on XMRV and other avenues? Isn't that the purpose of a forum?
Dead donkeys notwithstanding, XMRV is THE single most exciting finding for ME/CFS
Yes, there are many exciting fronts developing in the science on ME/CFS. However XMRV is by far the most exciting, intuitive, and now well-funded area for us. It's got the biggest guns, the most passionate biomedical researchers (all those retrovirologists, oncologists), the best media coverage ... And the huge field of prostate cancer XMRV research is making a splash - not only for prostate ca patients, but for ME/CFS too. When I read anecdotal accounts that some ME/CFS patients have gotten worse with pro-androgen therapy... and then I read about the latest XMRV prostate research showing that XMRV transcription is accelerated by androgens... another lightbulb goes on that we may be truly on to something... SO much just FITS when it comes to XMRV and ME/CFS. Maybe anti-androgen therapy might be a therapeutic option for some of us?
The fact is that our understanding of emerging disorders DEPENDS on back-and-forth enquiry between lab science, and the intimate knowledge by patients of the natural history of the disease. That's what happens on this forum... and that's what a focus on dead donkeys wittingly - or unwittingly - attempts to stifle. A focus on dead donkeys is
scientifically irresponsible, if not morally reprehensible. It just don't make sense!
Why NOT avidly discuss forthcoming XMRV research?
After all, we as patients have the best grasp on the natural history of this disease. Our active participation in discussing XMRV research is GREAT for science! Don't forget that the advancement of science for ME/CFS is genuine cause for concern by those whose careers depend on us being nuts! Even if XMRV were found not to cause pathology in ME/CFS (an increasingly unlikely prospect, at this point), the laser focus is now on a patient group which has known immunological deficiencies and is vastly underserviced with biomedical treatment ... In other words, the medical community and indeed pharma market are gradually waking up to the fact that this is a massive, lucrative and untapped market for scientific glory and treatment. Even if the CBT/GET ventriloquists on this forum have the energy to keep posting here, each day we are getting more money, interest, and scientific enquiry into our disease and XMRV. And they are looking more and more like a donkey's
A coming avalanche of XMRV studies - embrace it!
Suffice it to say that whenever I feel well enough, I search for the latest hot stuff on XMRV... and I'm happy to say that it's getting harder and harder to keep up with the new stuff. I will continue to fight the dead donkeys with posts on exciting facts and science on XMRV... just as I test my own assumptions. After all, I don't want just any treatment... I want treatment that WORKS! And I will continue to document the mind-bending quotes and methods of the psycholobby which have ossified treatment opportunities for us patients around the world, and for the past several decades. The historical stranglehold on biomedical treatment for this devastating neuro-immune disease is is a scandal of epic - and mediagenic - proportions, and it's time to WORK it!
How ironic that a patient group "known" to be so negative and lost in reverie, is fighting so hard to remain positive, and grounded in facts. If I'm wrong about XMRV, the LEAST of my worries is having egg on my face... At least I will have done everything possible to become educated on the science and viability of XMRV and other research for ME/CFS and my health.
After all, this is the Phoenix Rising Forum, not the Dead Donkey Forum, no?
