An ongoing dialogue on HIV/AIDS, infectious diseases,
June 2nd, 2011
Original XMRV/CFS Paper Almost, Sort-of Retracted by Science
From the pages of Science
In this week’s edition of Science Express, we are publishing two Reports that strongly support the growing view that the association between XMRV and CFS described by Lombardi et al. likely reflects contamination of laboratories and research reagents with the virus … Because the validity of the study by Lombardi et al. is now seriously in question, we are publishing this Expression of Concern and attaching it to Science’s 23 October 2009 publication by Lombardi et al.
In the roughly year and half since this story first broke on XMRV as a possible cause of CFS, there have been literally dozens of scientific papers (published, unpublished, and presented), many editorial comments, conference proceedings — and probably thousands of blog posts (I’ve added to the traffic) and impassioned comments from people suffering from this condition.
As I’ve noted before, perhaps the best coverage in the non-medical/science press has been over here in the WSJ.
And while there is now significant “concern” about this XMRV/CFS association, there is little doubt about the need for more research on CFS. One problem is that the XMRV debate could become a distraction in the search for other possible causes, host factors, diagnostic tests, and treatments. Let’s hope that doesn’t happen.
2 Responses to “Original XMRV/CFS Paper Almost, Sort-of Retracted by Science”
Paul E. Sax, MD
Contributing Editor
NEJM Journal Watch
Infectious Diseases
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Sort of retracted? No, not quite.
Editors of science asked for a retraction and Dr Mikovits from the Whittemore-Peterson Institute said it was way too early for a retraction since all of the 0-0% papers had methodology flaws in them.
It is terribly sad that while HIV AIDS hs been funded for 30 years with great successes, the epidemics of ME/CFS in 1984 has been deemed “hysterical” by the CDC, and this disease is still, in 2011, stigmatized and very underfunded.
Patients are thankful for the WPI to dedicate themselves to good research because no one had the guts to do it, aside some very few loyal physicians and scientists.
MECFS is not considered a “rare” disease, and it is an orphaned disease due to the fact that it is not under the umbrella of any medical specialty. The CDC has explored for decades now the link to a mental illness which stigmatize useven more.Some patients have been sick for decades, some 20-30 years, housebound, with no health care.
It is common knowledge amongst sientists that if they start researching MECFS then they are doomed to career suicide.
Patients are caught in a social political scientific and medical perfect storm, and not many are willing to elucidate the mystery. NIH, are you reading this?
David Tuller MPH at the New York Times, like Amy Marcus, has had more in-depth coverage than most. Both Dr. Jay Levy and Dr. Vincent Racaniello have stated to the Times that microbial research into ME/CFS needs to continue adding that abnormalities in the immune systems of patients are another factor.
Dr. Ian Lipkin aka the Virus Hunter has an XMRV/CFS study going as does the Blood Working Group and both should publish this summer.
The authors of Shin et al, who also published a negative study a few weeks ago, agreed that the use of antiretrovirals is not warranted, but added “It is also vital to state that there is still a wealth of prior data to encourage further research into the involvement of other infectious agents in CFS, and these efforts must continue.”
Video casts from the April 7 and 8 NIH ME/CFS State of the Knowledge Workshop are available online at the NIH site.