Levi
Senior Member
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- 188
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I want them to look at the genome and find out for sure that it's exogenous. If it happens to be located on the same place in the genome of all individuals it's endogenous and that is a whole different picture. To me that's huge and I'd like that done first.
I've expressed this view elsewhere but I now feel so strongly about it that I'm saying it again on this relevant thread that I've just found.
The very first thing they should be testing in my opinion is for XMRV infection in a wide range of ideopathic neuro-immune conditions, cancers, and any other conditions with an unexplained rise since the 1980s.
It's crucial to get early knowledge of what other conditions are related to XMRV infection for so many reasons:
- List of other associated conditions would give huge clues as to what CFS actually is, and how XMRV might be operating
- Would enable an overall assessment of the risk posed by XMRV
- Would provide a context in which to assess the significance of the WPI findings
- Would bring in all of the detailed knowledge already gained from study of other conditions
- At this stage, gathering as much knowledge as possible is far more important than obtaining rock-solid proof of the one piece of knowledge we have.
- Gaining precise knowledge is in any case impossible until tests have been refined
- Would have the biggest potential impact of any study in changing the whole direction of future research towards the most relevant/important areas
- Would bring in loads of funding for research into other conditions
There's a very good chance of finding other associated conditions because:
- XMRV is already linked with fibromyalia, autism and prostate cancer, and suspected to be linked to some Multiple Sclerosis, Gulf War Syndrome, Childhood Alzheimer's, Asperger's and Irritable Bowel Syndrome, suggesting it may be implicated in a wide range of conditions
- There are many ideopathic conditions with similar definitions to CFS, which have all risen in incidence during the same time period, with similar gender biases
- There is no reason to believe XMRV is not associated with other conditions
A quick, imprecise, wide-ranging study is quite simply the right, best, most efficient way to begin exploring a problem space. In my line of work, it's called a "horizontal slice". You would also conduct a "vertical slice" study of CFS, just as Alice_Band has outlined very well in this thread. Alice's approach would yield a huge amount of information about what CFS and XAND are and are not, for the same reasons that the horizontal slice would yield loads of information: you can cross-reference the results with all the other known data about the various categories to reveal a wealth of clues.
The need for an overview is so urgent that it should be done right away, 'quick and easy' - extreme scientific rigour is not a priority in the first instance. A similar but slower, more rigorous study could proceed in parallel, and more rigorous condition-specific studies would then follow. For the first, quick, urgent test, just 10 samples from each condition would be enough to give a good idea of the overall picture.
Of course we on this forum are liable to be blinded somewhat by our interest in focusing on CFS, but surely we can see there could be much wider issues at stake, potentially affecting hundreds of millions of people worldwide. I find the fact that this hasn't been a major immediate focus of research (not having been mentioned yet in any prospective study) quite terrifying. It tells me there is "nobody driving". It tells me there is no intelligent co-ordination of at least this particular area of medical research. It tells me that there is no overall focus on the speed and efficiency of how to gain knowledge vital to the lives of people who are suffering and dying now. And it tells me why it takes decades rather than years to realise the benefits of medical breakthroughs.
To whom could comments, suggestions, recommendations from this thread be communicated, I wonder?...
I think getting emotionally invested in XMRV as an explanation of CFS at this time is premature. The emotionally liable CFS population should not be encouraged to expect a cure from XMRV treatment before these types of replication studies have been completed, and even then only after successful clinical trials.
Some PWC here are pouncing on the XMRV-retroviral idea as a vehicle for CFS advocacy and politics, before ANY replications have been completed. I hope that does not come back to haunt us if XMRV fails to meet expectations.
But even if XMRV fails to explain CFS, the Science article has helped to raise awareness of our illness in some irreversable ways. More researchers are now aware that CFS is a problem and that we lack a proven causal model. That is the type of challenge researchers love to pursue. Also, we may have other retroviral infections that could be treated with ART, some good might come from this situation even if replication fails.