XMRV (Xenotropic murine leukemia virus-related virus) has been proposed as being somehow linked to Chronic Fatigue Syndrome (CFS) and autism. The link was made largely by a group led by Judy Mikovits of the Whittemore Peterson Institute.
The study went from publication in the highly prestigious journal Science in 2009, to multiple studies which couldn’t replicate those findings, to a nine-center study which tested the original samples and showed the results were “spurious”.
The lead researcher, Judy Mikovits was fired from the WPI. In the latest chapter in the story, Ms. Mikovits has been sued (Lawsuit Filed Against Chronic Fatigue Syndrome Researcher by Former Employer) and now jailed (Controversial CFS Researcher Arrested and Jailed). In a statement from WPI quoted by ScienceInsider:
“The Whittemore Peterson Institute was required to report the theft of its laboratory materials to law enforcement authorities. These authorities are taking the actions that they deem necessary.”
I’m having a tough time figuring out exactly why Ms. Mikovits was arrested and jailed in this. ERV (who has covered the XMRV/CFS story as thoroughly as anyone, and much more thoroughly than me) discusses this as well in today’s article (XMRV and chronic fatigue syndrome: I fought the lawl and the lawl won).
For those wishing a bit of history:
From a science perspective, the XMRV/CFS link quickly unraveled as multiple groups failed to replicate the results. In July Science published an Editorial Expression of Concern, including the statement:
Since then, at least 10 studies conducted by other investigators and published elsewhere have reported a failure to detect XMRV in independent populations of CFS patients. In this issue, 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.
In September, Science published two articles and a partial retraction on XMRV research. In False Positive, they reported that:
An October 2009 paper in Science found XMRV in the blood of two-thirds of the CFS patients examined, but more than a dozen labs have failed to replicate it to date. Millions of dollars have gone into clarifying the question, which has had far-reaching consequences for people with CFS and, if the virus lurked in the blood supply, the public at large. A nine-lab study published online this week by Science found that none of the labs could reproducibly detect XMRV or relatives of the virus in blood samples distributed under a blinded code
“False Positive” was a “news focus” article (i.e. not a research result) commenting on the research article, Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory Study .
The online supplemental material for the partial retraction finishes with: “We conclude the results in Figures 1 and S2 and Table S1 of Lombardi et al.(1) were spurious due to contamination with XMRV plasmid DNA.”
Simply put: Researchers from nine groups looked hard at the original samples for the paper linking XMRV with chronic fatigue syndrome. They found the results in the original paper were “spurious”, false positives, due to contamination. This led to the original paper being partially retracted.
To paraphrase one of the researchers involved with the nine-center check on the XMRV/CFS link: all three legs have been kicked out from under the stool supporting the idea that XMRV is linked to CFS.
And, now, the latest turn:
Last week ScienceInsider had an article, Lawsuit Filed Against Chronic Fatigue Syndrome Researcher by Former Employer
A little more than 1 month after firing Mikovits, the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) on 4 November filed suit against its former research director. According to WPI, after Mikovits was terminated on 29 September, she wrongfully removed laboratory notebooks and kept other proprietary information on her laptop and in flash drives and in a personal e-mail account. WPI, a nonprofit organization that’s based on the campus of the University of Nevada, Reno, also won a temporary restraining order that forbids Mikovits from “destroying, deleting, or altering” any of the related files or data.
Mikovits attorney, Lois Hart, said her client cannot speak to the media about the case, but she strongly denies any wrongdoing. In an e-mail to ScienceInsider, Hart stressed that “Dr. Mikovits’ integrity goes to the bone.”
and, this weekend’s report that the police had arrested Judy Mikovits (Controversial CFS Researcher Arrested and Jailed)
Let’s recall, the idea that XMRV is related to autism had even less support than the XMRV/CFS link. The “link” is by anecdotal report. This was first broadly promoted as far as I can tell by David Kirby (Is Autism Associated with A Viral Infection?). Since that time, no paper has come forth from the WPI group. Instead, two papers showing no link have: Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals and PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism. These are the only two papers I find with a search of pubmed with the search terms XMRV, autism.
I’d like to predict that the CFS community will have a segment who will continue to believe in the XMRV/CFS link and will be showing support for Ms. Mikovits, but that is already true. Comments from ScienceInsider already include:
Dr Mikovits and the WPI have done so much good work on ME/CFS in just 2 years.
I hope there work continues.
and
I have donated to the Mikovits Legal Defense Fund and suggest others who want to see the truth do so as well
I could also “predict” that instead of moving on from this theory, it will just morph into a new version (think “MMR causes autism” morphing into “mercury causes autism” which have both morphed into “vaccines in general cause autism). From ScienceInsider (emphasis added):
Less than a day after a new study dealt what many consider a lethal blow to the controversial theory that a newly detected virus, XMRV, is linked to chronic fatigue syndrome (CFS), proponents and skeptics of the theory squared off in a meeting. Judy Mikovits, the main champion of the idea that XMRV and its relatives play a role in CFS, didn’t make the case for XMRV, but instead, she offered new evidence that people with CFS had a virus “highly related” to XMRV. Her opponent, heavyweight retrovirologist John Coffin, stated that all three legs of the stool the hypothesis rested on had been kicked out from under it. Mikovits’s presentation underwhelmed several of the scientists attending.
One wonders if the drama of the lawsuit and arrest will only add to the support she is getting. If the CFS community has a parallel convention to AutismOne, one suspects that Ms. Mikovits will be given standing ovations and a “Gallileo Courage in Service to the Community” award. Given the purported autism/XMRV link, I wouldn’t put it past AutismOne to invite her.
People often decry the “conservative” nature of medicine. Here is a great example why. Some people put a lot of home into the XMRV story, both for CFS and autism. Some people will never let that hope go.
Left Brain Right Brain 
Over at ERV, the remarkably adept Abbie Smith noted:
This is, of course, unfortunately reminiscent of the Wakefield fiasco. Real scientists should have stood up and not acquiesced, despite the allure of a career-enhancing publication (in the Lancet or in Science). Nick Chadwick (a vulnerable Ph.D. student on Wakefield’s team) did the right thing; the others, not so much, as you can see in Dr. Dhillon’s “It wasn’t me!” CYA response to Brian Deer’s expose in the BMJ and BMJ editor Fiona Godlee’s call for parliamentary investigation of senior members of that team.
BTW, Smith noted “Judy Mikovits *has* presented at AutismOne.”
http://scienceblogs.com/erv/2010/03/xmrv_and_chronic_fatigue_syndr_11.php
She can now follow Andrew Wakefield into the new communities he has become a favorite of: “New World Order” “UFO” …
I hope this contagion of fraud and ineptitude can be contained and eradicated. Insane scientists and fraudsters do nothing to support honest science and scientists in the public sphere.
Oh good lord. I am picking up a theme here…
Read this:
http://www.chicagotribune.com/health/ct-nw-chronic-fatigue-scientist-arrest-20111122,0,5455739.story
Then follow the directions here:
http://twitter.com/#!/ChicagoScience/status/138849146231734272
That is all.
😐
The really arsehole result of this is that the likely response is that ethics committees will create even greater obstacles to genuine research. A giant step backwards.
@McD,
You may be correct but it would seem that rules already exist for theft. Tough to write rules for obsessive behavior.
Update from Trine Tsouderos/Chicago Tribune, complete with affidavits from the coworker who stole the lab notebooks as directed by Mikovits, hid them, and then delivered them to her when Mikovits briefly returned to Nevada after defying a court order to remain in the state:
http://www.chicagotribune.com/health/ct-nw-chronic-fatigue-scientist-arrest-20111122,0,5455739.story
The competition is really heating up for AoA’s next Galileo Award.
How interesting that Dr. Mikovits’ research is still correct and more pro papers than not appear weekly. This is a delicate retrovirus to work with-somehow “journalism”, so called, wants to ensure that truth is only what journalism wants to spin. Journalists rarely have much training or knowledge in what they write of.
Lo/Alter’s work stands, and see all the fresh discoveries elsewhere about this retrovirus. Check the journals-this stuff is real, and enlightening.
It is a bit early to be blowing off this disease(s) causative-much as two years in it was too early to be blowing off HIV.
Dr. Mikovits has been trying to protect the integrity of science and her lab’s solid work from the inroads of the Whittemores’ financial interests. I may they brought their for-profit lab in which had been scooping money from desperately ill patients with their unvalidated lab tests-and no, CLIA certification doesn’t make the tests valid (You pay a fee and they give you a CLIA stamp) and no, the UNEVX once VIPDx labs once RedLabs tests are not “clinically” validated either.
Dr. Mikovits hasn’t stolen federal monies nor diverted patients’ donations and other donations to her personal use. While the Whittemore’s have personal assistants to carry their dry cleaning and pick up $300 bottles of wine for entertaining, employ friends and family to do nothing, Dr. Mikovits brought in over three million dollars of research and private contract money and set to work with barely two lab assistants. The work has been replicated as shown by dozens of papers chronicling this new retrovirus’ characteristics and effects.
Dr. Mikovits could not tolerate the theft of those funds for the Whittemore’s private uses.
“The work has been replicated as shown by dozens of papers chronicling this new retrovirus’ characteristics and effects.”
Please provide some links.
There are multiple papers decidedly not replicating her research.
“Dr. Mikovits hasn’t stolen federal monies nor diverted patients’ donations and other donations to her personal use.”
I never said she did. Why bring this up?
“Journalists rarely have much training or knowledge in what they write of.”
Perhaps not. But the multiple researchers who worked in an attempt to replicate her work do have the knowledge and training. The parallels here are amazing. Instead of facing the fact that her work is not reproducible, we are supposed to accept the framing that this is a case of journalist vs. scientist? Remarkable in how closly this matches the way Andrew Wakefield is defended.
All that money floating around for research, and they still maintained pen-and-ink lab notebooks?
Wow, cutting edge researchers did not have a lab blog. Or at least digital records.
I tried to think how her situation could educate or enlighten us lesser mortals (not published in Science). And frankly it was really difficult. Nobody keeps records on paper. You need MS graph (or similar) to make the rudimentary graphs that are required for bulking up the standard powerpoint slide show manditory for surviving lab meetings.
Somehow we are expected to believe that this group of researchers met, discussed, communed, conflabbed or whatever without the benefit of powerpoint? Graphs? 3D bar graphs?
No. They wrote everything down in a wee lab notebook in joined-up writing. And someone nicked the notebooks.
My point is that in any modern lab, records are kept in digital fashion – probably in spreadsheets or graphs. And that various members of the lab may take off with copies of them.
I have absolutely no sympathy for researchers who fall prey to confirmation bias and can’t take a step backwards. But the charge of nicking lab notebooks is just strange – who keeps that stuff on paper these days?
The WPI are charging her with stealing records. It is just really hard to envisage that when records are kept digitally. Assuming they have the original copy and can compare with any ‘adjustments’ she has made. What is the problem.
Are we seriously expected to believe that all the records for this lab were pen-and-ink?
Lois Weston:
Unless Ms. Weston is counting ‘blog comments as “papers”, her statement is simply incorrect. There have been, so far as I know, only two studies that found XMRV in CFS patients and over ten that cannot – including the Simmons et al paper that found the WPI lab leading in the “false-positive” results category.
McD comments:
Not quite true. I’ve worked in two situations where is was mandated that “old-fashioned” paper lab notebooks be kept. The first was a classified project that was funded by the Dept. of Defense. The was a project that had considerable potential to yield patentable results. In both cases, paper lab notebooks were required for security reasons: computer records can be more easily copied or “hacked”.
Keeping a paper lab notebook is not necessarily a sign of incompetence, as McD seems to imply.
Prometheus
Lab notebooks are also more appropriate in some environmental conditions where electronics need be explosion-proof for example.
Do not be so arrogantly refers to records in the notebooks. How many cases
where paper records are more reliable than on digital media.
Oh for cripes sake. They mentioned flashdrives and the like as well. I also have worked in high security situations. Not in the past ten years (at the very least) have records been kept only on paper. Paper printouts were required for backup a decade ago, but these were printouts of digital information.
They need to be analyzed and run through some sort of stats program as minimum treatment. Reporting procedures then require the data to be digitized as well.
If the data is managed digitally, what exactly is going into the pen-and-ink notebooks that is so secret? Yes – it could be encoding data for blinded conditions. But that is not what is implied with what is discussed.
I did not mean to imply that keeping a pen and ink notebook is a sign of “incompetence”, just that it is a security measure that has been largely redundant for the last decade or so. While I am quite sure that any number of institutions retain similar security measures “on the books”, I am equally sure that any functioning lab would find them simply redundant.
The point I was making was that attempting to restrict the dissemination of information to other lab members is pointless. And is this a Bad thing? when every member of the lab has a copy of the raw data and if one person attempts to fiddle the books a la Wakefield, then it is blatantly obvious to the other researchers that something dodgy is going on.
So my dodgy-meter is going off, and not just over the absconding researcher.
McD,
Thanks for clarifying that paper notebooks aren’t a sign of incompetence – I keep a few on some of my “minor” projects and was feeling a bit miffed.
I’m all for electronic notebooks (and lot’s of data backup) and I encourage people in my lab to take their data with them when they leave. The more people who have the data, the harder it is to “correct” inconvenient data.
If the paper notebooks were the only place some of Dr. Mikovits data was kept, it could be that she wanted to hide them so that discrepancies couldn’t be found. No matter – nobody can replicate her findings and an independent test of her lab’s XMRV detection ability (Simmons et al 2011) showed that they were “number one” in false positive results.
Finding research fraud at this point would be like beating a dead horse.
I can almost (almost, but not quite) sympathise with the “vaccines-cause-autism” crowd; every time they have a Brave Maverick Scientist who finds irrefutable evidence that vaccines cause autism, that “scientist” ends up being exposed as a fraud. I can see how they might think it’s a conspiracy.
In a way, it is a conspiracy, but they are the chief conspirator. The “vaccines-cause-autism” folks are so ready to shower love and attention on any researcher who agrees with them, no matter how shaky their science or how malleable their ethics. The result is that they keep “falling in love” with the wrong sort, just like a dear friend of mine who’s on his fifth marriage.
Prometheus
Lo et al. produced the same findings as Lombardi et al, with a different PCR assay. The viruses found are not VP62/XMRV. The negative studies have failed to clinically validate their novel assays.
“One wonders if the drama of the lawsuit and arrest will only add to the support she is getting. If the CFS community has a parallel convention to AutismOne,”
People support robust science, perhaps you could try the same. Trying to create a drama over why people support the research of Mikvotis, Ruscetti, Lo, Alter, Hanson, and others is kind of silly. Are you now saying HTLV and HepC don’t exist?
“People support robust science…”
I wish that were true. If that were true, the “thimerosal caused an epidemic of autism” question would be dead. If that were true, the “MMR causes autism” debate would be dead. If that were true the various unproven and poorly supported “therapies” used on autistic children would be ignored.
I am not creating drama here. I didn’t go public claiming I had data linking autism and XMRV (data which Ms. Mikovits has still yet to publish, and which at least two studies refute). I didn’t send my post doc into my old office to remove lab notebooks. I didn’t file a police report against Ms. Mikovits. I also didn’t add a silly non sequitur like the last sentence of your comment, Greg.
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Appreciate the comments made by people who have experience and knowledge of how science labs are run. A little less ego would have helps on both sides. It is possible to disagree and respect, to respect but disagree .
I’m a retired communication lineman looking for the truth, let the chips fall where they may. It is difficult to find anything Dr. Mikovits has said in interview or in writing on the web. Stories offered as reference are removed when I try to check them out, videos of interviews are blocked or deleted ? i Find that more disturbing than the legitimacy of her work .
You don’t care about the legitimacy (or, more accurately, the lack of legitimacy) of her work.