8 CONNECTCFS The CFIDS Association of America As We Went To Press... BOARD OF DIRECTORS Publication of several XMRV studies of CFS patients is anticipated, with papers pending from groups at the U.S. Centers for Disease Control & Prevention, Koch Institute in Germany (presented at Centennial Retrovirus Bruce Allshouse Meeting in Prague), Tufts University (presented at Invest in ME conference in London), Institut de recherches New Castle, DE Treasurer cliniques de Montréal (presented at the Cold Spring Harbor Laboratory’s Conference on Retroviruses) and other institutions. This summer, the Department of Health and Human Services Blood XMRV Scientific Research Christoph Bausch, PhD Working Group, of which Association scientific director Suzanne D. Vernon, PhD is a member, will analyze St. Louis, MO results of analytical samples of XMRV processed by six laboratories (including the Whittemore Peterson Institute) to standardize assay results. Diane Bean Bethesda, MD The Wall Street Journal has published a series of articles about dozens of infectious agents (including XMRV) that pose potential threats to the blood supply. Added donor education and screening measures are filling gaps while Katrina Berne, PhD scientists improve methods of testing for and preventing spread of these agents. The Interorganizational XMRV Seattle, WA Task Force convened by the American Association of Blood Banking continues its discussion of donor and recipient Vicki Boies, PsyD safety issues for CFS patients. Association CEO Kim McCleary serves on this committee. (See page 3 for more on Chicago, IL blood safety.) Amy Divine Dr. Martin Lerner, a clinician-researcher who treats and studies CFS patients, has published results of antiviral Boulder, CO treatment of two patient groups in the journal, Virus Adaptation and Treatment. He found that CFS patients Vice Chairman who had one or more herpesvirus infections (i.e., Epstein-Barr virus, HHV-6, cytomegalovirus) but did not have co-infections with other agents (e.g., Borrelia burgdorferi, Anaplasma phagocytophila, Babesia microti, and anti- Stuart Drescher, PhD streptolysin O) responded well to long-term treatment with valacyclovir (Valtrex) and/or valganciclovir (Valcyte). Salt Lake City, UT Beginning treatment earlier in the course of illness appeared to be a factor that distinguished “responders” from Adam Lesser “non-responders” among the group that did not also have co-infections with other agents. San Francisco, CA Chairman For all the latest updates, please visit www.cfids.org/SolveCFS/SS10.asp. ■ K. Kimberly McCleary Charlotte, NC President & CEO Dimitris Papanicolaou, MD Connect With Us Online! Rahway, NJ www.cfids.org Robert Raidt Chicago, IL Our main website with thousands of pages of resources, references and archives. Brian Smith Omaha, NE www.SolveCFS.org Jennie Spotila, JD King of Prussia, PA Our website aimed at engaging others in the cause of Secretary making CFS widely understood, diagnosable, curable and preventable. Also home to information about Amy Squires the SolveCFS BioBank. Alexandria, VA PAID Patrick Venetucci Park Ridge, IL NONPROFIT www.facebook.com/CFIDSAssn US POSTAGE ORGANIZATION CHARLOTTE, NC PERMIT NO. 2989 Participate with a community of more than 4,000 “fans” on our main social networking site with daily PROFESSIONAL STAFF updates and exchanges on a wide variety of topics President & Chief Executive Officer of interest. K. Kimberly McCleary Chief Financial Officer www.twitter.com/PlzSolveCFS Kristina P. Hopkins Receive our “tweets” to stay up-to-date on news and resources. Scientific Director Suzanne D. Vernon, PhD www.youtube.com/SolveCFS Public Relations & Events Manager Sara L. Collins View webinar recordings and other affirming videos on-demand, as often as you wish. Major Gifts Officer Ashley A. Comstock Operations & Network Administrator Kim A. Almond Office Manager Gloria E. Smith Accounting & Personnel Assistant Lois J. Infanti Ways To Donate: CONTACT INFO ● Use the enclosed envelope The CFIDS Association of America ● Join the Chairman’s Circle monthly giving program PO Box 220398 Charlotte, NC 28222-0398 ● www.SolveCFS.org (secured by PayPal) E-mail: [email protected] ● www.cfids.org (secured by PayPal) Websites: www.cfids.org and www.SolveCFS.org ● Facebook cause: SolveCFS Resource line: 704-365-2343 Fax: 704-365-9755 The CFIDS Association of America PO Box 220398 Charlotte, NC 28222-0398 Resource line: 704-365-2343 Fax: 704-365-9755 Website: www.cfids.org Forwarding and Return Postage Guaranteed SOLVECFS The Chronicle of the CFIDS Association of America So Much News to Share! Spring/Summer 2010 Our fall 2009 issue of SolveCFS informed readers conditions. Dr. Vernon describes how exercise about an important study linking CFS to a newly challenges that provoke post-exertional malaise discovered human retrovirus called XMRV. News are being used by research groups to further about this discovery and other topics has been our understanding of CFS in her article, “The evolving so rapidly that it’s been a challenge to get Hallmark of CFS.” A new series of articles on another issue of SolveCFS off to print! We anticipate this topic began in our June Link. that there will be many new developments between the time this issue is published and when you read ● Dr. Julia Newton’s group at University of it; if there was ever an ideal time to connect to Newcastle published results of a study showing us online, it’s now! In addition to our monthly muscle proton abnormalities following exercise e-newsletter, CFIDSLink, you can find us on in CFS patients. Dr. Vernon describes this study Facebook, Twitter and YouTube, as well as our main and how it brings together other pieces of the website at www.cfids.org. Call our Resource Line CFS puzzle in the “Litmus Test.” at 704-362-2343 if you need help getting “linked up” ● U.S. Centers for Disease Control & Prevention to our online resources. announced that its CFS Research Program would The stories in this issue will help bring you up have new leadership and Elizabeth Unger, PhD, to date (or refresh your memory) about the busy MD, took over as acting chief of the Chronic events of the past few months. Here are a few brief Viral Diseases Branch on Feb. 14, 2010. IN THIS ISSUE updates about topics that we don’t report more fully ● This year the Association will be working to elsewhere in this issue. You can find links to these establish CFS as a topic eligible for funding and other resources on the web page devoted exclu- Page 1 SOLVECFS by the Department of Defense’s Peer Reviewed sively to this issue of SolveCFS at www.cfids.org/ Medical Research Program. We have asked So Much News To Share! SolveCFS/SS10.asp. to hear from veterans and active duty military XMRV Accelerates Scientific Interest ● Several very different infectious agents have been about their experiences with CFS and CFS- in CFS shown to result in persistent CFS-like illness in like illnesses. a subset of those who become acutely ill. In two Page 2 INNOVATECFS ● One of the U.K.’s national daily newspapers, articles “Precipitating Pathogens” and “We Are Embarking on the SolveCFS BioBank Not Alone,” our scientific director, Suzanne D. the Guardian, published an exceptional article BioBank Enrollment Criteria Vernon, PhD, reviews recent literature. about CFS/ME on May 13, “The Trouble with M.E.” There has been a great deal of affirming ● Post-exertional malaise is a cardinal feature media coverage about CFS so far this year. ■ Page 3 ACCELERATECFS Research of CFS that distinguishes it from many other Comparison of Published XMRV Studies Blood Safety Issues Explored XMRV Accelerates Scientific Interest in CFS Page 4 VALIDATECFS CFS Advisory Committee Makes In the October 8, 2009 issue of Science, researchers at reports, online forums and direct correspondence Five Policy Recommendations the Whittemore Peterson Institute, the Cleveland made public. As our scientific director, Dr. Suzanne Capitol Hill Visits Emphasize Clinic and the National Cancer Institute reported that D. Vernon, has stated, “None of the follow-up studies Opportunities to Expand Research 67 percent of 101 CFS patients tested positive for published so far represents a true replication study infection with xenotropic murine leukemia virus- and more work needs to be done to fully understand related virus (XMRV), a gammaretrovirus associated the finding published in Science.” Page 5 VALIDATECFS with a subset of prostate cancer. Only 3.7 percent of Webinars Bring World-Class Learning The May 14, 2010 issue of Science published com- 218 healthy subjects tested were positive for the virus. Directly Into Your Home mentary about the initial study from three groups of Clip This Schedule! A January 6, 2010 report, by researchers at the researchers, as well as a response from Judy Mikovits, Imperial College in London, found no evidence of PhD, and Francis Ruscetti, PhD, two of the 13 authors XMRV by polymerase chain reaction (PCR) testing of the initial study. The response offered amplification Page 6 VALIDATECFS of 186 CFS patients’ banked samples. A third study of certain details but contradicted information pre- First National Awareness Campaign reported finding no evidence of XMRV infection in sented elsewhere over the past eight months. Bottom Comes to a Close 186 CFS patients in the United Kingdom. The fourth line — more study is needed to resolve the important New Pain Campaign Gets Off the Ground study, by researchers in questions raised by all these reports. the Netherlands, did not Fortunately, further research is under way at several Page 7 CONNECTCFS find XMRV in the 32 institutions in the U.S. and other countries and more patients’samples they Conferences Spotlight CFS reports are forthcoming. There is currently no FDA- tested. Laboratory Other News from the CFIDS Association approved test available for XMRV and clinical studies methods and patient of America of treatments must be conducted to test their efficacy selection criteria differed The Legacy Fund against XMRV infection and their safety in XMRV- between the four studies positive patients.