This is becoming surreal. I am reading these threads with a sense of detachment; that this is part of a fictional plot involving some other people some other place. Is it me ? This is bizarre, though I could be forgiven for using stronger language.
I went to bed last night thinking about Judy Mikovits' talk on the 22nd January 2010. I am certain that she knew about the results about to be published from Dr Kerr and Gow, and yet I have watched her body language, her enthusiasm; she even comes across as being so relaxed. What a dichotomy. Two years of research that made news all around the world, about to be 'rejected' yet again and she still maintained an air of inevitablity in this talk.
What can be concluded from this ? The email I received from her was so knowing, so certain, that every lingering doubt I had vapourised. I began to feed the fate and starve the doubt yet again, but then this second study has taken those doubts off the life support machine and given them life.
There is so much at stake here. If I didn't have this bas888d illness it would make for exciting reading. Just imagine the political machinations at work at the higher echelons of the scientific community. Some of the protagonists involved will never work in front line research again dependent on which side of truth they land. Reputations will fall, and then some.
At what stage does doubt begin to gain the upper hand ? If you are reading this and you are honest with yourself, you will begin to feel more than a little uneasy. I certainly do.
I can only give you the facts, and the fact is that XMRV is being found all over the world. I was particularly interested in the fact that it was found in 1.9% of healthy controls in Japan. I think we need to ask for more details about this study, and indeed those for other countries too. I refuse to believe that XMRV doesn't have a passport; XMRV is an equal opportunities retrovirus. If it's found in the USA it has to exist all over the world. Afterall this isn't the 14th century.
I remember Judy saying that there 'can't be false positives'. If you test positive you have XMRV. Can we really be sure of this ? I myself have discounted the posssiblity of this being a contaminant after the virologist at the CDC confirmed that this was so. Who was this virologist and what did he say exactly ?
Dr Kerr has been at the forefront of research in gene dysfunction amongst ME patients, perhaps there is bias ? I don't believe this, and the fact that he and Judy have been awarded a grant to work together marginalises this thesis. Given Kerr's long track recorded in denouncing the psychiatric lobby, when few others would in this country leaves me in no doubt that he tried everything to find this virus. We could extentuate the realms of possibility and talk of conspiracy theories, but really, at this stage I have nothing to suggest that this wasn't a valid attempt to find the truth. I also find it difficult to believe that he wasn't in touch with Judy during the trial and as such this leaves a question mark over those that believe the testing procedures were suspect. I really hope they were, but I do believe they weren't.
Where does this leave the NCI, not to mention the journal Science ? Where is the CDC in all of this ? Was Reeves removed because they the CDC have found XMRV or was he removed because the CDC are not finding XMRV and when they publish their results in the coming weeks they can say, 'hey look, no XMRV and Dr Reeves has nothing to do with it'. I suspect that this is the likely scenario at this stage, though I have absolutely no evidence to support these fears. What I do know is this; the CDC will want to nail this once and for all before millions of tax payers dollars are thrown at finding XMRV in the general public.
What do I think now ? I believe there is a lot that us as patients and advocates are not being told. I believe that the next few months could be life changing, but we all said that in October 8th 2009 didn't we.
They say that the darkest part of the night is just before dawn. I have questioned my motives, detached myself from the politics. Yes I am biased against Wessely et al, and that is plain for all to see, but these words, perhaps misguided are said in all honesty.
I believe with something deep inside that we are at the end of the beginning not the beginning of the end. I really believe that answers will be found; but sadly, belief and science don't always sit well together. Each one of you will have to make up your own mind. I have made up my mind; we're getting there, we'll get there, but when ? How many more weeks, months, years can we take ? If we've waited this long perhaps we can wait a little longer ? True, but only if we know that the truth will reveal itself. That leaves our eternal friend hope, to guide us on our way. Maybe, I really hope so.
Kind regards, Mark