Time for the Big Talk, II. Expectations and consequences.

A

anne

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CAA press release on study:

CFIDS Association of America Expresses
Concerns About UK XMRV Replication Study

Additional and More Rigorous Research Needed


CHARLOTTE, N.C. (January 6, 2009) – The CFIDS Association of America issued the following statement in response to a study published in today’s edition of PLoS ONE that failed to detect the XMRV virus in banked samples drawn from 186 CFS patients in the United Kingdom. A study published Oct. 8, 2009 in Science reported that 68 of 101 CFS patients from clinics in the U.S. tested positive for XMRV.

“The CFIDS Association of America reviewed the study published in today’s edition of PLoS ONE. We are concerned about many elements of this study including differences between the patients selected by the two groups, different processes used to collect and test the blood samples, and the rapid nature of the new publication, as evidenced by the three days that separated the dates of submission and acceptance,” stated K. Kimberly McCleary, president and CEO of the CFIDS Association of America. “We urge the media and the research and patient communities to view these findings in the context of evolving understanding and to insist upon more rigorous and standardized replication studies before drawing conclusions about the role of XMRV in the pathophysiology of CFS.”

CFIDS Association scientific director Suzanne D. Vernon, PhD, made the following assessment: “The new report from the U.K. should not be considered a valid attempt to replicate the findings described by Lombardi, et al., in the Science article. This paper heavily underscores the need for expedient, yet robust, XMRV-focused research to build upon the results reported this past fall, studies like the one being conducted by the Department of Health and Human Services Blood XMRV Scientific Research Working Group.” Vernon holds her doctorate in virology from the University of Wisconsin and had 17 years experience in public health research on infectious diseases before joining the Association’s staff in 2007 to lead its research program. She added, “Without a standardized method of detecting XMRV, millions of dollars might be wasted on independent attempts to determine the prevalence of XMRV in different populations.”

“Every person whose life has been impacted by CFS wants urgently to identify the cause of and a cure for this devastating condition that affects millions of people worldwide. While time is of the essence, we must insist upon rigorously conducted and reviewed science that provides absolute validation, definitive answers and unbridled hope,” said McCleary.

The CFIDS Association of America is the nation’s largest charitable organization dedicated to making CFS widely understood, diagnosable, curable and preventable. It is the greatest source of funding for CFS research outside the federal government. To view Dr. Vernon’s detailed analysis of the U.K. study, please visit http://www.cfids.org/cfidslink/2010/010603.asp.

Citations:
Erlwein O, Kaye S, McClure MO, Weber J, Willis G, Collier D, Wessley S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 5(1):e8519. doi:10.1371/journal.pone.0008519

Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 8 October 2009. 1179052.
They say they are going to send this everywhere. Really well done. Good quotes. It was their failure to grasp the political implications of the things they were saying, doing, and not doing before that made me so frustrated, but they seem to be playing politics now, and I'm so glad to see it.
 

CJB

Senior Member
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I think XMRV provides a perfect opportunity to begin talking about cohorts. Obviously it will be essential in these studies, but the fact of all the "science" coming from the UK and now the CDC on "CFS" people who aren't actually...you know...sick...is something we need to plant in doctors' minds. And we need to frame the issue for the next five SUPERAWESOME HASTILY DONE WE LOOKED FOR XMRV SO YOU DON'T HAVE TO studies.
ComeBackShane is doing some excellent work on this front, if you haven't checked it out.
 

hvs

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Really well done. Good quotes. It was their failure to grasp the political implications of the things they were saying, doing, and not doing before that made me so frustrated, but they seem to be playing politics now, and I'm so glad to see it.
Agreed. Nice work. Clear the wires and broadcast it!!