Much Ado About Something! XMRV and CFS

imokyrok

In frustration at the events occuring in xmrv research this week I decided to post a diary to The DAILY KOS which is a very popular current affairs blog in the US on the unfolding situation.

Much Ado About Something! - XMRV and CFS
by imokyrok [Subscribe] [Edit Diary]

Sat Jul 03, 2010 at 08:37:33 AM PDT

In October 2009 The Whittemore Peterson Institute (WPI) published an account of findings in the journal "Science" by Lombardi et al that rapidly spread around the world. WPI claimed to have found that the relatively recently discovered retrovirus XMRV was frequently found in patients diagnosed with Chronic Fatigue Syndrome. Subsequent news releases claimed XMRV was prevalent in patients with Fibromyalgia and atypical Multiple Sclerosis.

The hope and excitement generated by this research would have to be experienced to be believed! People all over the world, disabled by these difficult to treat illnesses, for once found that more scientists were interested in researching the cause of CFS and hoped that at the very least the dismissive attitude patients contended with throughout much of the medical profession might at last start to change as people recognised that CFS and Fibromyalgia may well have an organic basis and was not "all in the mind" of it's sufferers.

Since then three studies were published which found no prevalence of XMRV in such patients. The WPI declared that none of these studies had replicated their technique faithfully. Hope started to fade. Then just last week all hell broke loose!

imokyrok's diary :: ::
Out of the blue a relatively unknown Dutch magazine called ORTHO reported on a leaked presentation given at a closed conference in Europe on blood born pathogens by Dr. Harvey Alter from the government agency The National Institues of health (NIH). The highly regarded Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. “The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy”, was one comment on the XMRV findings reported by Alter in Zagreb. “Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings.”

At the same time as news of the positive NIH/FDA study was emerging word came that a second government agency, The Centre for Disease Control (CDC) had failed to find any incidence of XMRV at all in their sample,(despite other studies finding it present in about 4% of the general population). Both studies were apparently past the peer review stage and about to be published. The Alter NIH/FDA study in "The Proceedings of the National Academy of Sciences"(PNAS) and the Switzer CDC study in "Retrovirology".

The CFS community and scientists around the world looked forward to having an opportunity to examine these conflicting government studies and hoped to learn much from their publication. It was not to be. First was the news that both studies had been held back from publication. Why would such an event occurr if the studies had already been peer reviewed and accepted scientists wondered. Then the CDC Switzer study was released and published in "Retrovirology" on July 1st. But a spokesperson for the NIH/FDA paper announced the while the FDA-NIH paper has been accepted for publication, the authors had decided to pull it back to conduct additional experiments. Publication will depend on how long it takes to fully address questions. "It's a matter of getting it right" he says.

Blogging scientists expressed their surprise at this uncommon turn of events and the CFS community expressed their heartfelt dismay. To say that the CDC has a less than stellar reputation among the CFS community and the professionals who treat them at the best of times is putting it mildly. The CDC is hugely invested in categorising CFS as a psycho-somatic disorder. Dr. Reeves, one of the studies authors, publicly criticized "Science" for accepting the original WPI Lombardi paper and stated he didn't expect the CDC would be able to find the virus - yet still played a major role in the study; providing the patients, helping to design it and writing the paper. Was such an a priori conclusion conducive to the scientific method?!

The Whittemore Peterson Institute has released a statement claiming that yet again a study purporting to replicate their findings had failed to follow their studies technique. Dr. Vernon, ex CDC researcher and now Scientific Director of The CFIDS Association of America concurred. She found fault with both the cohort use for the study and the techniques used to "replicate" the study. She declared: "So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set." This is a very damning statement coming from a researcher who once worked for one of the studies authors Dr. Reeves.

Conspiracy theories are a frequent occurrence on internet highways. Combine such tendencies with millions of people worldwide desperate for answers and behaviour among government agencies which raises brows in the scientific community and you are pretty much guaranteed an internet frenzy. Until the original paper by Dr. Alter is published in full this is one scientific controversy unlikely to die down any time soon.

Tags: CFS, Chronic Fatigue Syndrome, XMRV, Alter, CDC, NIH (all tags) :: Previous Tag Versions

The original has plenty of links to connect you to further reading if you're interested.
http://www.dailykos.com/story/2010/7/3/881376/-Much-Ado-About-Something!XMRV-and-CFS

LegacyUser

More on XMRV and ME

http://www.hfme.org/xmrvcfsandme.htm

"Thus we actually have no way of knowing if any M.E. patients were involved in the study at all, and that makes the results suspect to those of us who do have M.E. Knowing what we know about the wastebasket label "CFS", it makes us feel that the results of this study may not ever come to have any real value at all for M.E. patients, nor for many of those given a ‘CFS’ misdiagnosis. Perhaps the following comments, taken from an informal group discussion, will shed some light on a few of the reasons we need to consider this research with a healthy dose of skepticism. "

imokyrok

Further reporting on this situation:

CFS Central has learned that it was the CDC that made the initial request to pull the FDA/NIH XMRV paper after the Proceedings of the National Academy of Sciences (PNAS) accepted it. Sources have told CFS Central that higher-ups in the Department of Health and Human Services (HHS) made the ultimate decision to hold up the study. In addition, insiders said that HHS can keep any government study from being published—no matter how solid—and that it is anyone’s guess whether the FDA/NIH paper will eventually be published.

http://www.cfscentral.com/