November 2010
CFIDSLink—e-News 

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In This Issue

From the CEO
Research Matters
Public Policy Matters
You Matter
News & Notes

From the CEO's Desk

Twenty-five individuals delivered oral testimony at last month's meeting of the federal CFS Advisory Committee. CEO Kim McCleary urged the committee to develop a comprehensive research agenda for the Department of Health and Human Services to serve as a blueprint for health agencies, academia, industry and nonprofits to meet the challenges of CFS head-on.

Research Matters

A year has passed since the first publication linking CFS to xenotropic murine leukemia virus-related virus (XMRV). This high-profile report in Science and subsequent studies of XMRV have helped keep CFS in the headlines, attracted new scientific interest and deepened engagement by federal agency policymakers and researchers. Too often in the history of CFS promising leads have not been followed by larger studies or independent confirmation, so it's very encouraging that so many study results have been published or presented in the past 12 months, even if they don't yet resolve basic questions about risks, diagnosis and treatment. We regularly update our XMRV and MLV resource pages with the latest studies and news.

The most recent publication about this family of retroviruses reported on PCR testing of samples obtained from 293 patients seen at several academic hospitals in Boston, including 32 patients who met Fukuda criteria for CFS. All samples were negative for XMRV and MLV sequences. Scientific director Suzanne Vernon, PhD, reports on this study and two other studies of XMRV published in the Nov. 15, 2010 edition of the Journal of Infectious Diseases, in "Hide and Seek."

The Nov. 3, 2010 issue of Viruses includes a commentary article by Ila Singh, MD, PhD, that proposes criteria for a definitive study of gammaretroviruses in CFS patients. Dr. Singh's group has been studying XMRV and murine leukemia viruses for many years and she is currently testing freshly collected samples from CFS patients and matched healthy controls identified by expert physician Lucinda Bateman, MD. Amy Dockser-Marcus reported on Dr. Singh’s proposal and the study being planned by virus hunter Ian Lipkin of Columbia University in today’s Wall Street Journal HealthBlog

In its Oct. 20, 2010 Medical News & Perspectives section, the Journal of the American Medical Association (JAMA) reported on studies investigating the association of XMRV to CFS. Like many other articles summarizing the state of knowledge about XMRV, it concludes that more research is needed, but it also includes several statements affirming the real and disabling nature of CFS from thought leaders in the medical community. JAMA is the most widely circulated medical journal in the world; content is protected by copyright and the full article is available only to subscribers and on a paid-access basis.

Public Policy Matters

The Department of Health and Human Services (DHHS) CFS Advisory Committee met Oct. 12-14, 2010 in Washington, D.C. Here's a bulleted list of meeting highlights with links to the webcast, as well as the text of three recommendations submitted to the Secretary of Health.

The U.S. Congress returns after mid-term elections on Nov. 15. It will resume work on fiscal year 2011 funding bills that stalled and were held in place with a continuing resolution during the election recess. The Association is following developments closely and will work to protect the CFS-specific directives passed in the Senate versions of the health and defense appropriations bills.

The health care reform act calls for creation of an Interagency Pain Research Coordinating Committee, similar to the CFS Advisory Committee. DHHS is soliciting nominations from the public for six physicians and other health professionals and six representatives of leading research, advocacy and service organizations for individuals with pain-related conditions. Nominations are due by Nov. 26, 2010.

You Matter

Our popular 2010 Webinar Series wraps up with three more programs between now and year-end.

• Nov. 11 at 12:00 noon (Eastern time): "Doc Talk: Communicating With Your Health Care Professional." Dr. Lucinda Bateman will share strategies about how to enhance communication with your medical team and avoid leaving the doctor's office feeling frustrated and depressed.
  
  
• Nov. 18 at 1:00 PM (Easter time): "Minimizing Relapses: Pacing Yourself Through the Holidays." Bruce Campbell, PhD and Dane Cook, PhD, experts in the areas of pacing and exercise physiology, will discuss the science behind post-exertional relapse and how to avoid relapse during the holiday season.
  
  
• Dec. 2 at 1:00 PM (Eastern time): "Spirituality and Health." Dr. Gail Ironson will review the current scientific findings on spirituality, religion and health and will share ways in which spirituality can help one cope with everyday stressors.

The AABB convened an Interorganizational Task Force on XMRV in December 2009. Information about the Task Force was updated on Nov. 1, reflecting the recommendation to blood collection sites to actively discourage donation by individuals with a past or present diagnosis of CFS. The American Red Cross and many independent blood centers united under America's Blood Centers have implemented this recommendation and now educate every potential blood donor about CFS.

News & Notes

Award-winning author and CFS patient Laura Hillenbrand is again receiving rave reviews for her new book titled, Unbroken, scheduled for release on Nov. 16 by Random House. She tells the true story of World War II bombadier Louis Zamperini in this "testament to the resilience of the human mind, body and spirit." The book is sure to make bestseller lists and to focus attention on Laura's own triumph of mind, body and spirit. Several author profiles are coming up this month in major media outlets.

Dr. Morris Papernik discussed conditions that frequently co-exist with CFS in an Oct. 21 webinar, "Comorbid Conditions: The Alphabet Soup of CFS." The slides and recording of this and 15 other programs are available on our site for your on-demand viewing.

Better Business Bureau's Wise Giving Alliance conducted its biannual evaluation of the CFIDS Association of America according to its 20 Standards of Accountability for Charitable Organizations and reported that the Association remains fully compliant. The Wise Giving Alliance standards seek to encourage fair and honest solicitation practices, to promote ethical conduct by charitable organizations and to advance support of philanthropy. The CFIDS Association is the only CFS-focused organization to have received this designation from the Wise Giving Alliance.

The Association's annual fund provides the support needed to fuel research, policy and communications. We have set an ambitious goal to raise $5 million by Dec. 31, 2010 for programs that will stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private, and commercial investment. If you value these programs and services like CFIDSLink and the 2010 Webinar Series, please make a tax-deductible gift today.