Wednesday, November 25, 2009

Message from CFIDS.org

Getting "Right" and Giving Thanks

Seven weeks ago, a consortium of researchers at the Whittemore Peterson 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 replicate the XMRV findings, address validation
studies, develop appropriate screening and diagnostic tests, and 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 reported to be 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 CFS/ME 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://www.cfids.org/XMRV/default.asp#info.

With warm wishes for a peaceful Thanksgiving holiday,

Kim McCleary
President & CEO
The CFIDS Association of America
November 25, 2009

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Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective
treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.
 






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