Just read through this NCI Info. Useful to get a repeat view of the 'known science', but it's still frustrating that it's peppered with quotes to re-assure the public and downplay the situation. Like:
"There is currently no evidence to suggest that XMRV is causing a spreading epidemic."
Hmm...well of course as always it depends what you mean by 'evidence'. Here of course they mean peer-reviewed scientific studies. Meanwhile, back in the real world, XMRV is very probably a spreading epidemic. That's just much more likely than not, based on the CFS experience, the link with autism, the epidemic rise in autism, the work on potential for infectivity in the blood...all these factors, sadly, are inadmissible as 'evidence'. Perhaps it's one of those nice cosy friendly retroviruses that doesn't really spread itself about much, so let's not discuss it until we know for
sure that it's an infectious epidemic...one global health crisis at a time, please...
Anyway the part that most interested me, and the only snippet of new information, was the note that in the prostate cancer study, 6% of the 'noncancerous' controls tested positive for XMRV.
Now I think someone (maybe John Coffin) stated at CFSAC that the XMRV the WPI are studying is a slightly different strain from the one in prostate cancer, or at least there are different gene sequences, so they may not have been studying exactly the same thing. The prostate study was looking at prostate cells not blood cells. And these studies are both very small and their estimates of the level of infection in the general population could easily vary by a few percent within the margin of error.
BUT having used one's intelligence to think of all the clever ways the data could be
wrong, surely taking a moment to reflect on the implications if the results are
right is also a good idea?
1. Taken together with the WPI's finding of a 3.75% in noninfectious controls, this 6% from the prostate cancer study is a very similar figure, so it's at the very least a good clue that 3-6% is a good estimate of XMRV prevalence in the general population.
2. Perhaps the most important valid use of the 6% is that this figure points strongly against one possible weakness of the WPI study that's still being questioned in the public health information: the idea that the WPI's 4% in healthy controls might be caused by them drawing from geographically related areas to the infected patients. It's unlikely that the prostate cancer study had the same geographical ties.
3. The thing that intrigues me most is that the details of the controls suggest something else as well. Suppose, hypothetically, that these two studies are both fairly accurate results within a few fractions of a percentage. In that case:
- about 3.75% of
healthy controls have XMRV
- about 6% of
noncancerous controls have XMRV
The difference between these two groups is around 2%. That suggests that the percentage of the population who are non-cancerous but not healthy and infected with XMRV is roughly 2%.
So: the figures so far suggest that 2% of the population have XMRV and are not healthy. Of course their ill health may not be related to XMRV. Then again, it may be that this 2% consists of people with MS, IBS, GWS and CFS/ME and various other illnesses of unknown cause.
To put it another way: if CFS/ME is 0.5% of the population, we may represent roughly a quarter of the population who have XAND. Many of the other 75% may have exactly the same illness we have but with different diagnoses. But some of them may have some other condition, and
identifying what that condition is would be the biggest step forward you could take towards understanding XAND. Who knows, the rest of the XAND population might have an
important illness.
As I keep re-iterating, the first study I would undertake based on the evidence available so far is to test for XMRV in small populations of every ideopathic neuro-immune disease and find out which ones are linked. This is the obvious first thing to do if you are looking to find out the truth. Once again, Gulf War Syndrome is the most obvious and crucial test to do: I will be mighty relieved as and when I finally hear that such a study is taking place.
Let's put it this way: you just found an overwhelming link between XMRV and an ideopathic neuro-immune condition. Er...have you got any other ideopathic neuro-immune conditions? You do? Lots of them and you haven't a clue what's going on with any of them? Oh, and their symptomology is so close as to make them all practically interchangeable diagnoses. Oh come on, I know you scientist dudes have no choice but to be specialists - that's the main reason I didn't join your ranks - but surely there's somebody out there who can see the wood for the trees?
So anyway, let's take a leaf out of the spin doctors' books and see what they could have said instead of "there is no evidence that..."
They could have said "The best guess we have based on the research so far is that 2% of the population have a previously-unknown immune disease called XAND (previously known by names including CFS, ME, FM, GWS, IBS, MS etc), and that a further 4% of the population are carriers for the retrovirus that causes it. We have no idea how the retrovirus is transmitted, it most likely transmits in the same ways as HIV, but there almost certainly must be other means of transmission as well".
Of course, they don't want to cause a panic, and there we differ...
And I do understand all the reasons to be cautious about drawing conclusions, scientifically, from very little evidence. But at the same time, come on! Look at all the evidence, in the round, and it does present a very clear and unambiguous picture of the most likely explanation. If you're going to spend most of your time explaining why it might not be true, please tell us at least something about what it means if it IS true.
And for some bizarre reason, for everything else the authorities are saying, that bigger picture is the one thing that nobody seems to be talking about. Present company excepted, of course...