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Message from Lydia E. Neilson, M.S.M, Founder
Chief Executive Officer
National ME/FM Action Network
Re: XMRV Testing?
As you are aware, the Whittemore Peterson Institute (WPI) announced that the XMRV retrovirus had been found in ME/CFS blood samples and also in FMS, although only a small amount of blood samples had been tested for FMS. This retrovirus was first discovered in some people who have prostate cancer.
As a precautionary measure, Canadian Blood Services announced that people with ME/CFS could no longer give blood donations. This affects all of Canada except for the Province of Quebec who has its own blood agency, HEMA Quebec, which is doing its own investigations.
The question has arisen, can a person be tested in Canada for XMRV and the answer is in the negative. Testing is being done in the U.S. and some Canadians have gone there at their own expense to get tested, with varying results.
It is important to remember, that this is research at the moment. Before we know what role XMRV plays with ME/CFS and FMS, the tests must be replicated by independent research and once that is done, then the next question becomes, is it the cause or another way of contracting the illness? We hope that these questions can be answered by the time we have the 2011 conference and we can move on to the next steps.
In the meantime, unless you are involved in a research study, to get tested for XMRV will lead to more questions than answers. Once you have been tested, what can be done with that information? What does it mean to your doctor? In addition, if you are on insurance disability and the test comes back negative, it may work against you and the insurance company may give you a hard time and cause you problems with your disability pension.
What XMRV has done is bring an interest in research and leading to funding That is a good thing. Due to the extensive research, a different outcome may occur than what we presently know.
Please rest assured that the National ME/FM Action Network is keeping a watchful eye on the situation and will keep you informed.
Lydia
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