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The problem for me is that while Gerwyn's explanations are very convincing, except for that other patient group no one has voiced the same criticisms. Racienilli or whatever his name is, has not. Neither did the ME Association. Neither did the CFIDS Association. Nor has MERUK said anything. All these people are in touch with retrovirologists. None of them are concerned about those issues. That's why, even though they seem convincing, I'm gonna wait and see what happens.
Khaly's blog is not convincing at all to me. The issue about the Oxford definition is overdone. Nothing in that definition says anything about excluding patients with organic diseases other than those that cause severe fatigue. My apologies but it is standard procedure in medical studies to exclude diseases that can cause similar problems in research studies. The Oxford does not exclude all organic conditions.
Nor does the definition say that people with central symptoms are excluded. This is retrovisionist, wishful thinking on the part of overheated activists. The main problem with the definition as I see is that it doesn't require specific symptoms and it allows more mood disorders in. But it DOES NOT exclude CFS patients. I posted the definition on the Forums - just read it.
It would be great of if that much maligned definition could be the cause of XMRV's problems but I don't see how it can. Its a false reed.
Khaly's and Mary's blogs may read well and be full of sound and fury but when I take a close look at them I don't find much there.
In Dr Vernon's first two statements she argued strongly for true replication studies. In her third response she didn't. What's changed her perspective here? The published research has not changed we still have no true replication studies, we actually have even more reason to believe that these blood studies are unreliable because of Sharma's findings presented at the retroviral conference. And yet Dr Vernon's tone has changed quite dramatically. I don't get it.
Whether XMRV is in any way associated with CFS will be the subject of further investigation. But these investigations must be designed appropriately and impeccably. Investigators from several U.S. institutions reported outcomes from recent XMRV studies at the 17th Conference on Retroviruses and Opportunistic Infections (CROI 2010), including infecting and establishing chronic XMRV infection in rhesus monkeys. Interestingly, XMRV was localized to the reproductive and lymphoid organs in these animals.
Time and precious resources are being consumed by studies in which the results are controversial ones. The CFIDS Association of America is working diligently to foster the type of well-designed studies of CFS and XMRV that will provide definitive grounds for moving forward on this hypothesis so that history does not repeat itself. True to our mission statement, we will continue to lead, support and conduct research with integrity, innovation and purpose in order to make CFS widely understood, diagnosable, curable and preventable.
I think I'm confused over Dr Vernon's response because she calls for appropriately and impeccably designed studies but also seems to suggest that the first three studies were approriately and impeccably designed because they used "accepted" definitions.
The cohort definition is only one part of any study design. As we've seen in the three negative studies, methods are also a huge component. I think if you look at everything the Association has published on these studies, it is clear that none of them are replication studies and none of them are impeccable.