CFIDS Association President and CEO Kim McCleary
From the CEO's Desk
Over the past five months, research on the retrovirus XMRV has generated unparalleled new scientific and media interest in CFS. The publication in Science on October 8, 2009 first linking CFS and XMRV has been covered by more than 750 media outlets. In 2010, two groups in the U.K. and one in the Netherlands failed to validate the association with XMRV, although these studies used different laboratory methods and case-defining criteria than the group led by Vincent Lombardi, PhD of the Whittemore Peterson Institute. Media reports have diminished with each successive study, but after the third negative publication, some news outlets declared the case closed.
But headlines don’t tell the full story. An article titled, “Calling Science to Account,” in the February 18, 2010 issue of Nature states:
“Like sausages being made, or legislation being passed, the process that turns scientific developments into headlines and into radio and television reports isn’t pretty to observe. Nor is it optimal...Journalism in science, as in other spheres, has evolved into an ugly machine – called ‘churnalism’…Science is being misrepresented as a cacophony of sometimes divergent but nonetheless definitive ‘findings,’ each warmly accepted by colleagues, on the record, as deeply significant. The public learns nothing about the actual cut and thrust of the scientific process, and as a result is beginning to adopt a weary cynicism that can only rebound on science in the long run.”
It’s frustrating to see simplistic scorecards cast in the media about issues that we know too well are complicated (CFS case definitions) and exacting (laboratory methods used to find a new human retrovirus). The finer details of studies are obscured by the media, so the Association has invested significant time in issuing detailed analyses and maintaining an updated list of reports following each of the XMRV publications.
With each new study, we have attempted to provide an objective assessment and to give context for the findings. Challenging design, methods, data and conclusions is a vital part of building scientific consensus, although it may be perceived as choosing sides or aligning with one group over another. There are other studies to come and, as we have counseled many times over the past five months, studies don’t always yield the result one hopes for or expects. We continue pressing for appropriately designed replication and validation efforts and studies that inform about the unique characteristics of XMRV that may help make sense of all the data collected so far. In the meantime, scientists have an obligation to publish new data and to submit their conclusions to close inspection and genuine debate.
This process used to be confined to peers, speaking within the fairly closed confines of scientific conferences and professional meetings; now, largely due to the Internet and social networking tools, it extends to interested communities and the general public. But science isn’t American Idol and we can’t simply vote off the researchers whose results we don’t like.
Four studies are not enough to answer the questions about the role of XMRV in CFS, or resolve other complicated issues in science. The science has to move forward, even if the process isn’t as direct or straightforward as any of us would like. While patience is in short supply after long years of suffering and searching for answers, it’s important to remember that all of the developments related to XMRV have come in a relatively short period of time. We simply don’t have solid answers yet.
As my colleague Dr. Suzanne Vernon stated in her analysis of the most recent XMRV study by Dutch researchers,
“XMRV is a newly described virus that infects humans. There may be virus variability making it difficult to detect, and it may be more easily found in organ tissues rather than blood. There are going to be numerous technical, biologic and epidemiologic challenges associated with linking XMRV to CFS and other diseases including prostate cancer. Whether XMRV is in any way associated with CFS will be the subject of further investigation. But these investigations must be designed appropriately and impeccably.”
Researchers who gathered at the 2010 Conference on Retroviruses and Opportunistic Infections shared fascinating new data about XMRV and other studies about this virus are forthcoming, including more CFS studies. We await data that extends our understanding of the role of XMRV in CFS, but we may not issue detailed commentary on other negative validation studies that do little to extend our knowledge base. That time can be invested in fostering studies that help us understand CFS.
In the meantime, we must sustain the momentum of all the robust studies of CFS being conducted by many highly capable and reputable research groups across the U.S. and in other countries. A recording of our Feb. 18, 2010 webinar about the Association’s research program is available online and we encourage you to watch it. CFS remains a disabling multisystem disorder that warrants more research attention, not less. Progress continues, no matter what the latest headlines might say.
President & CEO
The CFIDS Association of America
March 3, 2010
P.S. There have been many questions about the use of the terms “replication” and “validation.” They are often used interchangeably, but they actually reflect very different study designs. Briefly stated, replication is repeating the same methods and arriving at the same conclusion. Validation is reaching the same conclusion by different – but scientifically acceptable – means. Both are crucial to achieving scientific consensus about a particular phenomenon, but opinions vary about which step is more important. There are competing interests that might motivate different groups to attempt one approach over the other, but that’s a different topic for another day.
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