Institute, Cleveland Clinic and the National Cancer Institute published
results of a study linking XMRV, a human retrovirus, and CFS. XMRV had
previously been linked to an aggressive form of prostate cancer.
This Oct. 8, 2009 publication in Science continues to attract worldwide
media attention and has ignited interest in CFS from many disciplines
within the scientific community. As Dr. Daniel Peterson stated at the
Oct. 29, 2009 meeting of the federal CFS Advisory Committee, "XMRV
is a scientific stimulus package for the field of CFS research."
We couldn't agree more. Congratulations to the team led by Dr. Judy
Mikovits at the Whittemore Peterson Institute and inspired by the
Whittemore family, especially Andrea Whittemore-Goad, who has suffered
with CFS for 20 years since age 11.
In recent weeks, the U.S. Department of Health and Human Services has
formed an interagency task force that is
meeting regularly to appropriately replicate the CFS studies, address
validation studies, development of appropriate screening and diagnostic
tests, and to address the safety of the blood supply. There has not yet
been a formal statement from the Department about this interagency
effort, but the National Cancer Institute (part of the National
Institutes of Health) posted an informational question-and-answer page
about XMRV on November 18, 2009. More information from the federal
agencies is expected soon, especially on the topic of blood safety.
Numerous follow-up studies are under way at academic centers and
government labs in the U.S. and other countries. On November 11, the
Cleveland Clinic hosted a meeting of researchers studying XMRV in
prostate cancer, CFS, and other diseases. Last week, the Medical
Research Council of the U.K. held a meeting on ME/CFS at which XMRV
studies were discussed. These investigators are proceeding cautiously
to ensure that their results are comparable to the initial study based
on the characteristics of patients and controls tested, and the
laboratory methods and procedures utilized. Although it's tempting to
pass along rumors about which groups might have found positive and
negative results in samples they've tested so far, we will await
published data from authoritative sources before posting updates.
Response from the CFS community to the initial study, media reports and
burgeoning online discourse has run the gamut from salvation to
skepticism, from relief to fear, from euphoria to panic. These varied
and dynamic reactions have created communications challenges, as
organizations and individuals have tried to keep up with the latest
news and separate data from opinion and rumor from fact. With the many
channels by which people now receive information, new sites have sprung
up and existing ones are busier than ever. We're using a combination of
new and traditional media to keep our constituency informed. Content,
tone and timing are all important and, at times, we acknowledge that we
have gotten only one of the three completely right. And we recognize
that these missteps have created some questions and strong feelings
about our response to the XMRV study. Be assured that we share the hope
and anticipation that these important findings will lead to immediate
advances in diagnosis and treatment. And know that we're listening to
feedback, shared both directly and indirectly, with us. We're
constantly working to refine our messages to ensure that we deliver the
factual, focused communications you count on.
On this Thanksgiving eve, we express gratitude for the dedicated
efforts of all researchers, professionals, and volunteers who seek to
advance understanding of CFS, including the team led by the Whittemore
Peterson Institute. We are most grateful for the sacrifices of donors
at all levels who have sustained the CFIDS Association of America over
the past 22 years and who share our relentless determination to make
CFS widely understood, diagnosable, curable and preventable.
For more information about the topics mentioned above, please visit
http://capwiz.com/cfids/utr/1/GJXYLRKWOS/KNCULRKYHU/4315166281.
With warm wishes for a peaceful Thanksgiving holiday,
Kim McCleary
President & CEO
The CFIDS Association of America
November 25, 2009
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