Dear Friends:
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
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667 Fax (613) 829-8518
E-mail: ag922(a)ncf.ca
Web:
http://www.mefmaction.net