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.
Results of the 9 participating labs' tests for XMRV/MLVs, as described in Simmons et al.
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.
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Thank you for keeping the news and perspective at our fingertips. In the wake of so much disappointment I see hope for progress. I implore everyone in the field—patient, advocate, physician and scientist—to keep the fires burning. There is something everyone can work on. One day at a time.
As one of the many CFS/ME suffers who tested “postive” for XMRV in early 2010 and then watched the debate turn ugly between the “believers” and “skeptics” it is a relief to finally get an answer I can understand and believe myself. It is disappointing that we don’t have a concrete cause to go after, but chasing an incorrect path would be worse. From personal experience I feel that a viral or retroviral cause still makes sense. I hope this difficult period hasn’t, as some have said, made CFS/ME an illness that researchers will be afraid to work on in the future.
I am hoping these blood samples are used to look into this matter further. I never believed the XMRV theory but was excited to just get something done after 40 years of waiting for anything to be tested. I for one , am sure I had the Epstein Barr Virus, I had had Fibromyalgia since 1972 but in 1998/1999 period something very definate happened to my body something 1000x worse than the fibromyalgia. Something that took away my husand, health, home, children and grandchildren and left me not only waiting but wishing to die. You have in your hands samples and the ablity to find out what that was that destroyed my body and apparently at least 1 million other bodies. After 40+ years of suffering not only the pain but the distain of the medical society, I deserve to know what happened to me that took away my life and my will to live.
Dorothy,
I have the exact same illness it seems and was like seeing my own exact words and feelings being expressed. I pray to die. I loved life before my illness and was a hard working fun loving human being who lost family, job, friends, and actually everything to this dreaded disease. The pain is unbearable with the fibro, autoimmune? no one will corroborate but tests are off, doctors non caring and oblivious wanting to seek refuge in a psych diagnosis for sheer laziness and lack of education, time etc that it takes to treat someone so utterly complex and those around me found me aberrant like it’s catching. No one can understand in my world and after twenty three years, I am just holding on by a thread and dream and pray to die. So when you put your comments on there I thought no one has said it the exact way it’s happened to me as well. And how do others survive being alone without help etc and where to go to look as I grow into my senile years having lost the richness of middle age life that I had so looked forward to when I was working and young as I worked hard to get just what I wanted then got it and lost it all. And then the friends go as they can’t believe it’s not all my doing and I am choosing this and gosh I wonder how long I can financially last and what creative idea besides moving to raining Oregon so I can be put out of my misery when I admit complete and utter total defeat which in my heart of hearts I know I already have. I have to fake to all who don’t know lest the medical profession have me committed for suicide ideation and that would just put one more nail in my coffin. Illness like this after years of course makes on depressed but they think then its just a matter of depression and gosh anything to get away from the responsibility. Went to multiple people for help; no alternative healer has helped and all is financially going to ruin. I haven’t had the energy to even file a simple tax return this year and know I have a few weeks left and everything is that way.Just to get through the day and night and to get dressed on occasion to get a few provisions I hardly can do at all. So I am a virtual shut in and my last ridiculous doctor I found had put agoraphobia as my diagnosis since I can hardly leave this horrid condo. I fake it to the very few last people who on rare occasions include me in their lives but in truth no one does. It’s too depressing and I wondered how many people like me are out there and how do they survive if they are not rich and or have someone to help them out? I have survived only but that’s it and it’s not much but I had a tumor and thought it was malignant and gave me morphine and for those few weeks I thought I was leaving this world were the happiest I had been in years.That was about nine years ago and I was sad and angry to live. I am jealous when people die around me, who does that? It sounds like you get it and have it as well. How many people after doing all the research and searching for healing everywhere to no avail and feel like this? Do you speak with anyone like us? I wonder what the suicide rate is for those who get no hope/help. I wonder how long I can last and some sort of strange spirituality keeps me alive and thinking of Job and why God would make a mockery of one’s life when one has attempted to live a good life.