From
Facebook by Kim McCleary,
President & CEO The CFIDS Association of America
November 25, 2009
CFIDSLink Extra: 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 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://www.cfids.org/XMRV/default.asp#info.
Warm wishes for a peaceful Thanksgiving holiday.
Kim McCleary
President & CEO
The CFIDS Association of America
November 25, 2009
Labels: XMRV
