What will you do if XMRV turns out not to be the answer?
It's a question that I asked myself recently, after reading about all the recent research which suggested contamination.
I came to the conclusion that it's too soon for me to properly consider the answer, because there's still so much XMRV research to be published and carried out yet.
There's a lot of high profile studies being carried out this year.
I'm relatively new to ME (7 years), so I don't have much awareness of the history of it.
But it seems to me that more has happened for the ME/CFS community since the discovery of XMRV than has happened for ME/CFS for many years.
I don't know if I'm right about that?
It's hard for me to tell, because it might just be my own awareness of ME/CFS research that has increased, rather than the actual research, but since the discovery of XMRV in ME/CFS patients in late 2009, the profile and status of ME/CFS seems to have increased, and the profile of ME/CFS research seems to have increased.
So I wonder if the XMRV story has massively improved the outlook for all of us, whatever the outcome?
And so I think that focusing on XMRV has
not done our community a disservice at all.
I have personally been investing a lot of hope, and a lot of interest, in XMRV being the answer for me/us, and I have found that helpful for me.
It was an unconscious thing: I didn't decide to become so interested in XMRV, and I didn't know that it would be helpful for me, in terms of hope.
It just happened.
I have been a bit worried that if XMRV came to nothing then I would feel quite devastated, dejected and empty for a while, at least while I adjusted to the news.
But if XMRV doesn't work out, I believe that it has already led to other important research that will keep our hopes alive.
I'm sure that Judy would, for example, search for other retroviruses.
I think also, Judy intends to trial immunomodulators for ME patients, at the new WPI clinic.
But there is also other promising research in the pipeline, such as the proteins in the spinal fluid.
I think there is so much non-XMRV research that is likely to flourish over the coming few years.
But like I said earlier, I think it's too early to look away from XMRV yet.
It's probably about a year too early to have any decent insight into what the outcome of the XMRV research will be.
There's tons of very important research in the pipeline.