Back to 2010 Listing
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In This Issue
From the Board
Public Policy Matters
News & Notes
From the Board of Directors
It is a critical time in CFS history and the CFIDS Association stands with you. From the fall issue of our print publication, SolveCFS, a message from the Board, “Not One Alone.”
Murine leukemia virus-like retroviruses (MLVs, which include XMRV) remain the intense focus of scientific endeavor and media attention. As announced in September, the National Institutes of Health has tapped "virus hunter" Dr. Ian Lipkin of Columbia University's Center for Infection and Immunity to coordinate a study to bridge labs and methods. This study, and Dr. Lipkin's innovative approach to pathogen detection, was reported last month by top journalists in the Wall Street Journal and New York Times.
There are also several institutions and companies making progress on large-scale testing methods for MLVs. Amy Dockser-Marcus continued her Wall Street Journal coverage with a Nov. 23 report on assays being developed.
There will be nine invited presentations on MLVs at the Dec. 14-15, 2010 meeting of the Food and Drug Administration's Blood Products Advisory Committee, including an update on the blood safety study being coordinated by the National Heart, Lung and Blood Institute. Labs participating in this study experienced delays in testing samples, which held up a progress report expected in November.
Our XMRV resource page is updated regularly to reflect the latest studies, events, news coverage and background. You can also find an archive of links to past news at the bottom of the page.
The National Institutes of Health will convene a State of the Knowledge Conference on ME/CFS on April 7-8, 2011. This conference is being organized by the Trans-NIH ME/CFS Working Group and will be open to the public. More details to follow as the agenda, speakers and registration process are finalized.
Public Policy Matters
The Food and Drug Administration (FDA) regulates the collection of blood and blood components used for transfusion or for the manufacture of pharmaceuticals derived from blood and blood components. FDA has sought the advice of its Blood Products Advisory Committee on the deferral of donors based on a diagnosis of CFS or prostate cancer and testing for the newly identified MLV-related retroviruses (that include XMRV) associated with CFS and prostate cancer that may pose a concern for blood safety. The committee will consider the evidence at its Dec. 14-15 meeting (see “Research Matters” above). The AABB and several other organizations involved in blood collection and transfusion will give statements at the meeting. Last week, the American Red Cross clarified a policy to indefinitely defer individuals reporting a past or present diagnosis of CFS. The policy was fully implemented by Oct. 11, 2010 and data on deferrals (from the American Red Cross and other centers) will be available to the committee. CFIDS Association CEO Kim McCleary will attend the meeting and present a statement that supports the indefinite deferral of individuals with CFS from donating blood, based on the body of evidence of possible risks to recipient and donor amassed over the past 25 years.
Congress has yet to pass 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 working to protect the CFS-specific directives passed in the Senate versions of the health and defense appropriations bills.
Toni Bernhard, who has had CFS since 2001, shares her Buddhist-inspired approach to the emotional or spiritual challenge of being ill in her book, How to Be Sick. Jennie Spotila suggests, “Don’t let the title fool you” in her review of Bernhard’s book.
Our 2010 Webinar Series is now complete and three new recordings/slides are now in our archive.
- “Doc Talk: Communicating With Your Health Care Professional.” Dr. Lucinda Bateman shares strategies about how to enhance communication with your medical team and avoid leaving the doctor’s office feeling frustrated and depressed.
- “Minimizing Relapses: Pacing Yourself Through the Holidays.” Bruce Campbell, PhD and Dane Cook, PhD, experts in the areas of pacing and exercise physiology (respectively), discuss how to avoid holiday-induced relapses and the science behind post-exertional symptom exacerbation.
- “Spirituality and Health.” Dr. Gail Ironson reviews the current scientific findings on spirituality, religion and health, shares ways in which spirituality can help one cope with chronic illness and provides a guided imagery exercise that participants called “a gift.”
News & Notes
Newsweek, the world's second-largest news weekly magazine, provided readers of the magazine and online content with an update on CFS and viral research that has been the focus for the past year. Read Claudia Kalb's "Validation in a Virus?" from the Dec. 6, 2010 print edition. Twenty years ago, CFS was Newsweek's cover story for its Nov. 12, 1990 edition.
Award-winning author Laura Hillenbrand's new book, Unbroken, is atop best-seller lists and her 23-year struggle with severe CFS is also making headlines. She appeared on "The Today Show" on Nov. 19 and articles about her have been featured in the Washington Post, USAToday, Newsweek and Elle magazine, to name just a few publications. Laura has also done several radio programs and will be the guest in the first hour of the popular NPR program "The Diane Rehm Show" on Dec. 20.
The Washington Post, Wall Street Journal and Bloomberg News covered the statement issued by the American Red Cross about its policy to defer individuals with CFS from donating blood. The CFIDS Association has long counseled CFS patients not to donate blood or organs and has been working with the American Red Cross, AABB and centers united under America's Blood Centers through AABB Interagency XMRV Task Forces.
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.
A group of CFS patients and support organizations led by the ME/CFS Worldwide Patient Alliance published a half-page ad in Monday's Washington Post on page A12. The ad and an accompanying press release were intended to generate media coverage, stimulate research and federal funding and focus attention on the poor standard of care available to millions who suffer from CFS worldwide. The CFIDS Association shares these goals and acknowledges the diversity of strategies and tactics it will take to achieve them. None of us is in this fight alone.
The fall issue of SolveCFS: The Chronicle of the CFIDS Association of America was sent to supporters last month. We create a page-by-page listing of web links to stories for each issue to update stories with information after it goes to press. The print publication will be made available online next month.