Framing of the Research Question
Cort, not having a go here, but I believe the above quote encapsulates a lot of what is wrong with many of the scientific arguments about XMRV/MLV and CFS (including among us patients).
It seems to me many scientists are simply trying to answer the research question "Is XMRV associated with CFS". They are concerned with XMRV not CFS.
If on the other hand they were concerned with CFS they would be asking, "Is XMRV or something other MLV related virus causing CFS? If not XMRV, then what is it in our blood that is reacting in those antibody tests?" THESE are the big questions for us.
As a patient, I really don't care if it's XMRV, ABCD, or MLVZ. I just want them to find what it is as it could ultimately bring treatment for us.
Since the Lo/Alter paper it has been clear that CFS might be about about a group of viruses far wider than XMRV. The WPI have clearly been saying for some time that many of their patients are also infected with other MLV's. But many scientists, such as the ones that sparked this thread, keep focusing XMRV (there would be a big hole in their theory if they didn't!). But so do many of us patients - are we adding to our own problems here?
BTW I think the contamination explanation for differential in the patients vs controls is a weak argument - there are almost 10 studies now (not just CFS) all showing consistent low rates in controls. It seems too amazing to believe that they have all been accidentally contaminated at the same rate.
No, no, no Dr. Yes. That kind of immune response will not do. Think about it.....That kind of response is not necessarily specific to XMRV and they want something specific to XMRV do they not?
Cort, not having a go here, but I believe the above quote encapsulates a lot of what is wrong with many of the scientific arguments about XMRV/MLV and CFS (including among us patients).
It seems to me many scientists are simply trying to answer the research question "Is XMRV associated with CFS". They are concerned with XMRV not CFS.
If on the other hand they were concerned with CFS they would be asking, "Is XMRV or something other MLV related virus causing CFS? If not XMRV, then what is it in our blood that is reacting in those antibody tests?" THESE are the big questions for us.
As a patient, I really don't care if it's XMRV, ABCD, or MLVZ. I just want them to find what it is as it could ultimately bring treatment for us.
Since the Lo/Alter paper it has been clear that CFS might be about about a group of viruses far wider than XMRV. The WPI have clearly been saying for some time that many of their patients are also infected with other MLV's. But many scientists, such as the ones that sparked this thread, keep focusing XMRV (there would be a big hole in their theory if they didn't!). But so do many of us patients - are we adding to our own problems here?
BTW I think the contamination explanation for differential in the patients vs controls is a weak argument - there are almost 10 studies now (not just CFS) all showing consistent low rates in controls. It seems too amazing to believe that they have all been accidentally contaminated at the same rate.