By K. Kimberly McCleary, President & CEO
Two years ago, the possibility of XMRV as a causative agent of CFS raised high hopes for unequivocal validation and rapid means by which CFS could be objectively diagnosed and effectively treated.
Today, the journal Science has published three important articles:
- “Failure to confirm XMRV/MLVs in the blood of patients with CFS: a multi-lab study” by
Graham Simmons et al. on behalf of the Blood XMRV Scientific Research Working Group (SWRG);
- “Partial retraction” by Robert Silverman et al., regarding a portion of data published in the initial report from Vincent Lombardi et al. dated Oct. 9, 2009; and
- “False Positive” by Jon Cohen and Martin Enserink, a provocative eight-page news article by two staff writers that follows XMRV from initial discovery up to the present.
These materials are currently accessible also if you register (for free); we are working to enable full-text access through our patientINFORM collaboration and will update links as soon as we receive authorization.
In the SWRG’s Phase III study, none of the 19 assays used by nine participating labs was able to distinguish previously XMRV/MLV-positive CFS cases from healthy blood donors or pedigreed negatives on the basis of results for XMRV or the larger family of murine leukemia viruses. This study is the seventeenth peer-reviewed publication that does not support the original report linking CFS to this family of retroviruses. The retraction of data from the Cleveland Clinic on the basis of sample contamination further weakens the proposed link. A statement in the press release from Science indicates that the editors are in contact with the authors of the original report about further action on that paper; an Editorial Expression of Concern was issued in May after the authors declined the editors’ request to retract the publication.
Read more about the studies published today in a summary by our scientific director, Suzanne D. Vernon, PhD, (also a member of the SRWG) in “Today’s Science Studies Xplained.” A live on-line chat with the senior author of the blood safety study, Dr. Michael Busch, and University of California at San Francisco virologist Dr. Jay Levy, will be hosted by Science at 3:00 PM (Eastern) today at http://news.sciencemag.org/sciencenow/2011/09/live-chat-chronic-fatigue-syndro.html. The chat will be archived for later reference. There has been heavy media coverage of many of the past XMRV-related publications and we anticipate the same for this package of articles. We will make frequent updates to the listing of articles on our XMRV Resource page at http://www.cfids.org/xmrv/resource-listing.asp. On Oct. 14, 2011 at 4:00 p.m. (Eastern), we will host Dr. Busch and Dr. Simmons for a webinar presentation of the study results. Dr. Steven Kleinman, a member of the SRWG and an advisor to AABB, will moderate the discussion. Registation informationwill be posted early next week. [Note: The webinar recording, the slides and more info can be found at: http://www.research1st.com/2011/10/14/xmrv-updates/]
Because the SRWG study was organized as a means to evaluate the risk of XMRV to the blood supply, its conclusions will be of interest to blood collection organizations in the U.S. and other countries. The CFIDS Association restates its long-standing recommendation that individuals with CFS not donate blood or organs. The AABB Interorganizational Task Force on XMRV issued a statement today that blood screening for XMRV is not indicated by the available data and that it will re-evaluate blood donation guidelines as they apply to people who have had CFS in the past but now feel fully recovered.
We share the deep disappointment of many CFS patients and scientists that the initial data did not hold up. Whether you or a loved one has been diagnosed recently or has been ill for decades, this news comes as a blow to hopes for rapid advances in the care available to CFS patients. In “False Positive,” CFS pioneer Dr. Dan Peterson refers to the “CFS roller coaster” of promising early findings that have so often failed to pan out. The ups and downs have been an especially difficult part of the CFS experience for many, many people over the years.
The urgent need for better diagnostics and treatments must be met. We are determined to translate the heightened attention and deeper engagement XMRV has attracted into sustainable progress. There are many other solid leads that merit the same rigorous follow-up as XMRV has received over the past two years. Our Research1st.com site is dedicated to reporting on the best and most promising leads.
There are other positive outcomes. XMRV has drawn much-needed attention to issues of case definition and the pejorative name. These topics warrant more intense discussion by scientists and policymakers alike. It has also intensified the study of the role of infectious agents, and perhaps an aberrant immune response to many agents, that may be at the heart of this devastating condition. The story doesn’t end here. There are many recent developments that give patients every reason to hope for accelerated progress. Learn more about the Lights’ Million-Dollar NIH Award and the CFI, a privately funded research initiative that will be very complementary to the Association’s research program.
The CFIDS Association supports research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. Our mission is to make CFS widely understood, diagnosable, curable and preventable.
K. Kimberly McCleary has served as the Association’s chief staff executive since 1991.