‘Altered’ Reality: the XMRV Papers Disappearing Trick

June 30, 2010

Posted by Cort Johnson

Amy Dockser Marcus at the Wall Street Journal has become the go-to journalist for news on XMRV and CFS in the national media. Now she’s broken the news that the Alter study, soon to be published in the prestigious journal “The Proceedings of the National Academy of Sciences of the United States of America”, has now been withheld from publication. This followed reports that a negative study by the CDC was yanked at the last minute from publication in another reputable journal ‘Retrovirology”. The papers were reportedly put on hold because because ‘senior public health officials’ wanted to see either ‘consensus’ or simply a clear reason why the papers disagreed. Marcus called the move ‘rare’ and stated it was causing ‘a stir in the field’. IACFS/ME President Fred Friedberg called for the immediate publication of both papers.

The path to publication is tricky. There’s the need to get money, usually lots of it, to start a  study. If a researcher works in an institutional setting the resulting paper may have to pass review at that level. Then they have to meet the criteria for publication. Once that occurs a sigh of relief is undoubtedly given because now the paper is  now on its own. The scientific community will poke and prode and shine a bright light on it and it  may fail but at least it’s out there…months or even years of research have a tangible result.

Except in this case. Dockser reported her science contacts stated it” is unusual for a paper to be held after it has already gone through the formal peer-review process and been accepted for publication”.  The situation was unusual enough that neither the CDC, Dr. Alter or FDA apparently even thought to check with public health officials prior to submitting their papers for publication. Fearing an embarrassing rift between two key agencies on an important health issue, public health officials, however, stepped in at the last minute to ensure that neither paper saw the light of day until they could judge which one was correct – leaving researchers in the dark and patients just plain aggravated.

Who wins/loses? The DHHS spares itself the fate of having two departments posting diametrically opposed results. Who loses? The DHHS by playing the role of the heavy and by getting egg on its face by letting things get to this state. (If they were this concerned why was no one monitoring both efforts?) The Research community loses, by not, at least at this point, having all the facts at their disposal – facts that could inform ongoing and future research efforts. The CDC loses by giving an already untrusting CFS Community on an opportunity on a gold platter not to trust them.

At the end it’s astonishing – at least to this layman – how little resolution there is to the XMRV question 8 months after the publication of the initial paper. The problem was reportedly not simply that the papers disagreed; it was that they disagreed in a manner which didn’t lend any clarity to the XMRV question; ie even after looking at them it is impossible to tell who was right and why….

Too many stones unturned? – One wonders if the CDC is giving full attention to the XMRV question. The agency pulled back on the DeFreitas virus in the 1990′s when top officials determined that they had better places to spend their money. If the CDC is getting bushwhacked by outside findings on XMRV one has to wonder if a similar cost benefit analysis has caused the agency to leave some stones unturned in the race to understand XMRV. Discuss it here.

8 comments

{ 8 comments… read them below or add one }

John June 30, 2010 at 4:34 pm

8 months isn’t even the right figure- it’s been 4 years since the publication of the XMRV/prostate cancer connection and there are still studies coming out which either agree or disagree with the initial findings.

At the 2010 CROI in San Francisco, the CDC reported they didn’t find XMRV in prostate cancer either. Well they did find it but at a prevalence of only 1% as opposed to the twenty-plus percent prevalences reported by other groups. However if you watch the presentation, you can see that something that was really interesting was the fact that when CDC sequenced the positives, they formed a distinct branch of MLV from XMRV. Is the CDC simply finding a different but related(and possibly less prevalent) MLV while missing XMRV?

http://www.retroconference.org/2010/Abstracts/37160.htm

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cinderkeys June 30, 2010 at 5:56 pm

The problem was reportedly not simply that the papers disagreed; it was that they disagreed in a manner which didn’t lend any clarity to the XMRV question; ie even after looking at them it is impossible to tell who was right and why….

Where did you hear this? Is there good evidence that the usual culprit, the cohort problem, wasn’t involved in the discrepancies?

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Cort June 30, 2010 at 7:38 pm

I have no idea what was causing this and good idea about the cohort…..I got it from the report by the reporter.

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Liz July 1, 2010 at 4:42 am

Great summary, Cort!
I read the Wall Street article repeatedly last night, even highlighting sections so I could understand who was doing what and why. One can only assume that there is in-depth discussion happening now behind the scenes because at this point in the debate, somebody needs to say something!

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Gail (Upnorth) July 1, 2010 at 7:49 am

Now the CDC paper has been published and the other paper pulled back. Sometimes it’s hard to be an optimist when it seems that M.E./CFS patients are karmically screwed. I’m holding out only minute hope now that there will be a positive paper.

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Laurence Swift July 3, 2010 at 5:51 pm

FYI, here’s a Comment I placed in the BMJ (British Medical Journal)

http://www.bmj.com/cgi/eletters/340/mar05_1/c1284

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John July 5, 2010 at 10:35 pm

All this conspiracy stuff is missing something so big that it’s all quite laughable, with the thing everyone is missing being the fact that the exact same thing that is being labelled a ‘conspiracy’ in CFS has existed as a ‘controversy’ in prostate cancer studies for the past 4 years!

Namely, the fact that since the initial publication of the reported XMRV/prostate cancer association way back in 2006, every couple months a new study comes out reporting an association followed a few months later by another study coming out which doesn’t find any XMRV at all! It bears duly noting that this has been going on since before the XMRV/CFS paper was even published, with some of these studies most likely having commenced before it even occured to the WPI to test CFS patients for XMRV! No conspiracy needed!

Also, when the monkeys were infected with XMRV those researchers couldn’t find XMRV in the blood via PCR either, they had to kill the monkeys and look at tissue to find it. This was in monkeys that researchers knew were infected because they did it themselves! This clearly shows XMRV is hard as shit to find, and as the saying goes, there’s no need to suspect malice when incompetance will suffice! Do you see how many exclamation marks I’m using!?!? That’s how ridiculous this all is!

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Judson July 7, 2010 at 9:20 am

if you have a second, please sign the petition to get the other studies released ! http://bit.ly/xmrvpetition

The petition is @change.org

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