Flamed by Cort!
Let me see if I can respond helpfully. Cort, I have often posted how much I appreciate this forum. It provides a haven of like-minded patients to tell us that we are not alone. It provides a moderated forum, so posters can agree to disagree on many aspects of the science on ME/CFS, without being personally attacked. And it's thanks to you that I and many patients can learn from your forum, and your website. In the spirit of a moderated website however...
1)
I stand by my perceptions.
My deepest concern is that Dr Vernon is nit-picking WPI's methodology, without showing even a professional level of critique for the severely flawed European cohorts/lab methods. Perception is everything, and to me, this unbalanced critique comes across as unprofessional, and unscientific, and indeed petulant. That Dr Vernon would openly and liberally critique WPI's methodology in the media, and yet remain so silent on the profound methodological flaws across the pond is appalling, and indeed a very poor reflection on her genuine appetite for scientific discovery and credibility, and her desire to help advance the field of science on ME/CFS. Credibility is everything, and in my mind, the CAA has some major backfilling to do.
2)
If something says something unscientific - when it comes to ME/CFS - MY LIFE - I will critique that. If someone in power doesn't act when I believe they should, I'll speak up. This has nothing to do with humility, and backing away in awe from people that you imply I should defer to. If something doesn't make sense to me scientifically, I won't roll over and play dead. I WANT to understand the science! And yes, advancing good, thorough, balanced science so I might have a chance to get my life back is essential to me! Yes, I'll be wrong some of the time. And I'll change my mind when the scientific facts convince me to do so - so you may not lose your house after all. I'm not pushing for Vernon to say (yet) that "XMRV is IT". I'm pushing for a BALANCED SCIENTIFIC CRITIQUE of the XMRV science. Two very different things.
But Cort, your suggesting that I would defer to anyone - simply because they have so-called experience is ludicrous. It almost comes across as telling a patient with 11 years of ME/CFS, biopsy-confirmed opportunistic infection, and RNase-L deficiency that they don't know anything about this disease? C'mon. This IS the internet age. And as many wise clinicians have noted, patients sometimes DO know more than their practitioners. That's not heresy. It's a fact.
She has spent 20 years immersed in this field.... has helped invent the field of gene expression... is a professional. Like any professional she knows her field; like any amateur we don't a scintilla of the knowledge that she does....She is professional and she is creative...
Whether Dr Vernon invented the field of gene expression, or is creative or "is a professional" is irrelevant to the issue posed in the missive to the CAA. After all, it's the unquestioning, blind following of certain psychologizers in ME/CFS (after all, they have decades of experience, and are "professionals") that got us into this mess. Thank you for letting me scratch your belly, but I'll follow logic and science.
like any amateur we don't a scintilla of the knowledge that she does.
Like it or not, I do hugely respect the learning from this patient community and - recognizing that this may be heresy - do place the scientific opinions and insight of many posters here on par with the researchers. I also recognize that any researcher is after all human, and potentially open to bias. You do a disservice to the patient community by implying that our intimate knowledge of ME/CFS... gained both by living the symptoms - and out of necessity by reading and reading and reading... should meekly and automatically defer to that of "professionals". The awe-struck passive mode of submission to so-called authority hasn't served me - or the ME/CFS patient community - all that well. But there's a difference between scientifically calling someone down to the mat, and attempting to ridicule them. In other words, I'll be blunt and honest, but will try to be courteous.
3)
I would welcome Dr Vernon helping us understand where she's coming from.
Instead of accusing her of being non-professional maybe it would be better to try to understand where she's coming from; trying to adjust your understanding a bit instead that you or I know better.
After all, as you said yourself, she's been silent on this!
I realize that we think we've found methodological flaws but both Dr. Vernon's and Dr. Shepards silence on them is illuminating.
No, her silence doesn't tell me anything, although it certainly opens the door wide open to conjecture. Did she want that? That's conjecture too. Not helpful. Silence just add isn't all that factual. The whole point of my posting is to
challenge her to illuminate us - and indeed the scientific community -with a balanced critique of the science on BOTH sides of the pond!
4)
Does the "Easy Route" serve us best?
Based on her experience I'll give her the benefit of the doubt. The easiest and simplest thing for me to conclude is that she knows what she's doing and that was her professional opinion on the matter.
C'mon Cort... you're often SO "on" when you stick to the science. You can do better than challenge me to have some humility. Show your mettle: why not ask Dr Vernon directly to address the flaws across the pond? Why in heaven's name are you automatically "concluding that she knows what she's doing?". Challenging Dr Vernon is not audacity or boorish. It's necessary, given the gaping holes in logic both in the material referenced on the CAA site, and her stunning and unbalanced silence on important issues. And it's important for your credibility.
5)
What you said:
This is excuse, me - pretty wild.
We can do better.:Retro smile:
And just before posting, I re-logged on and saw that I'm way late as usual! Better late than never. It needed to be said. As Popeye said, I YAM what I YAM!