Tuesday, March 29, 2011

It's awfully important to some to be highly specific about the viruses, but not the cohorts being tested

XMRV-Bloggerama-Day, MONDAY, MARCH 28, 2011:

The CDC, and by extension the NIH, the NHS and other governmental health agencies, and medical science at large has ignored us for decades. My belief is that they will no longer have that luxury anymore even if XMRV turns out to be the 'blind alley' some, inexplicably, think it already is.

Any of the doctors, researchers, scientists, who have expressed concern what this could mean if this represents a false finding, the damage it could do to the collective psyche of this patient community?

Where has your concern been for the past 25+ years?

Don't worry about how we'll take the hard news if XMRV doesn't pan out. We have so much fun every day, we'll somehow manage to deal with it. Most of you never worried about us before, so you don't have to start now.

Oh, yeah--one more thing. On this issue of dismissing the findings of Lo et al as not confirming the findings of Lombardi et al, which has been stated by Trine Tsouderos as much as any one person I know of--did it ever occur to you that the alphabet soup is difficult to keep tabs on?

There's XMRV, MLV, HGRV, PMLV, XMLV, HMRV...I've seen all of these used. I can't keep track sometimes, and I think I actually know what the differences are (although I'll steer clear of defining them here). Is it a crime against science to refer to them generally as XMRV?

I know that wouldn't be correct. But, really. This is all confusing enough. The study of MLVs is not new, but the specific retrovirus XMRV is. Is it such an awful thing if we 'think' of the MLVs found by Alter & Lo as 'XMRV' for the sake of discussion?

Because it seems to me that's what many people--patients, advocates and other interested parties, and journalists as well--have actually done. Yet it's awfully important to some to be highly specific about the viruses, but not the cohorts being tested.

Double standard? Is the difference between the terminology used for the viruses in question more important than the differences in diagnostic criteria?

Why? Read more>>

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