“Sit tight,” leading U.S. ME/CFS experts counsel a confused global patient community.
Contradictory results are sure to emerge, they advise, from the multitude of studies – some collaborative, some not – that are now steaming ahead in a race to clarify the possible link between the XMRV retrovirus and chronic fatigue syndrome.
The consternation began Jan 6…
With publication by researchers at Imperial College London of the paper “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome” in the online publication PLoS ONE.
Other researchers and the science news media leapt on the controversy…
Just as they did when the initial Science article by Drs. Lombardi & Mikovits, et al. (“Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with CFS”) broke last October.
According to an article that Science posted online – also on Jan 6 (“Chronic Fatigue Syndrome Attacked Again” ):
“One distinct possibility, says John Coffin, a microbiologist at Tufts University in Medford, Massachusetts, who studies retroviruses, is that both papers are right. He called the PLoS ONE paper too ‘preliminary’ to settle the debate and said XMRV could show more genetic variety, and thus be harder to detect, than anyone assumed.” Another possibility, Dr. Coffin suggested, is that “distinct strains of XMRV appear in different parts of the world, like the retroviruses HIV and HTLV (a leukemia virus).” He also joins other researchers in suggesting that “CFS may be a ‘suite of diseases’ with similar symptoms and various causes” – i.e., that there are subsets.
In fact, the resulting exchange quickly became a shootout…
As The Economist described it – “Zapp!… Biff!… Blam!… Splat!”
Among the first return volleys on Jan 6&7 were:
• An expression of concern by the CFIDS Association of America, quoting their scientific director Dr. Suzanne Vernon, who stated “The new report from the UK should not be considered a valid attempt to replicate the findings described by Lombardi, et al. in the Sciencearticle.”
• A Whittemore-Peterson press release, stating that differences in techniques render the Imperial College team’s project a “failure” and its conclusions “meaningless.”
And within hours a long list of news sources rushed to report, including:
• Medical News Today (“New virus is not linked to CFS, suggests UK research”)
• Discover magazine (“Scientist Smackdown”)
Later, on Wed, Jan 13…
The Reno Gazette Journal quoted Dr. Mikovits as commenting in response to the Imperial College team’s report: “You can’t claim to replicate a study if you don’t do a single thing that we did in our study. They skewed their experimental design in order to not find XMRV in the blood…. We are still trying to develop drugs to treat CFS. That was our goal, and nothing has changed.”
To follow the latest on XMRV:
• Join Dr. Judy Mikovits’ Jan 22 Presentation and Q&A on XMRV, which ProHealth.com will stream live from Santa Barbara. Dr. Mikovits is very enthusiastic, and plans to provide news about the current science, address some of the “myths” that have arisen, and preview plans for international testing and treatment trials.
• Follow CFS research reporter Cort Johnson’s blow-by-blow coverage on PhoenixRising (http://aboutmecfs.org),
• And visit ProHealth.com’s information-packed ME/CFS & FM Message Board.