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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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- 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.
"There is currently no evidence to suggest that XMRV is causing a spreading epidemic."
I don't think anybody's keeping track. Basically the government doesn't care about any CFS. We can't even get tracking information on SS applications. Nor can we get anyone to track the rate of CFS as young people come down with the HINI flu. Both the CAA and IACFS/ME have tried; it wouldn't be that hard - they're keeping data on these patients - but the feds are not interested.
If the feds thought that this was an important disease maybe they'd lasso a bunch of hospitals into a tracking effort; for now all we have are population studies from regional locations.
I find that I keep coming back to the figures from the WPI, particularly the 95%, and thinking about what that implies. One of the conclusions that seems obvious to me from this extremely high percentage is that the people who meet the definition of CFS are only a subset of the people with XAND.
Whereas I would say that there's enormous value in conducting a variety of studies using different definitions so that we can get a much better picture of exactly who's affected and which definitions are the most accurate.