A scientific paper embraced by many chronic fatigue syndrome patients as a ray of hope has been retracted after a tumultuous year that included allegations of data manipulation and felony charges involving stolen property against the study's lead researcher.
In the paper, published in 2009 by the prestigious journal Science, researchers reported they had found evidence of a retrovirus called XMRV in the blood of patients diagnosed with chronic fatigue syndrome much more frequently than in the blood of their healthy peers. The paper immediately caused a stir, leading teams of scientists around the world to try to confirm the findings.
Patients rejoiced at the possibility of an explanation for their illness, which has long confounded researchers. As the Tribune reported in 2010, some patients even began taking antiretroviral drugs designed to treat a different retrovirus, HIV.
At the same time, the paper's lead researcher, Judy Mikovits, then employed at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., began linking XMRV to other frustrating disorders, including autism and Gulf War syndrome, without publishing data to support her statements.
Soon, independent teams of scientists began reporting they could not find evidence of the retrovirus in the blood of CFS patients or anyone else. Researchers hypothesized that lab contamination could have given rise to the original findings. Mikovits vehemently denied it.
Then, earlier this year, several authors on the original paper reported their data were flawed, resulting in a partial retraction. Science staff attempted to get the papers' authors — including Mikovits — to agree to a full retraction, but the group could not agree on the wording, Science Executive Editor Monica Bradford said in an interview.
In particular, Mikovits and others wanted to include a statement that they had confidence in their larger conclusions about the presence of the virus, Bradford said. But some of the authors were uncomfortable with that, as was Science, she said.
On Thursday, Science's editor, Dr. Bruce Alberts, announced the journal would take the unusual step of retracting the paper itself.
Alberts listed several reasons for the retraction — the partial retraction of data earlier in the year, the failure of multiple labs to reliably find evidence of XMRV in CFS patients' blood, poor quality control in some of the experiments and the acknowledgment by the paper's authors that they had left out some important information.
"Science has lost confidence in the report and the validity of its conclusions," Alberts wrote. "We regret the time and resources that the scientific community has devoted to unsuccessful attempts to replicate these results."
In an interview, Alberts said the episode was an unfortunate waste of time and resources, for scientists and for patients. "I think this whole thing has been a tragedy for science," he said. "It is very sad that the patients got tied up and confused by it."
Attempts to contact Mikovits were unsuccessful.
Annette Whittemore, president of the Whittemore Peterson Institute, wrote in a statement that the institute would carry on with its mission of researching the illness. "It is not the end of the story," she wrote. "Rather it is the beginning of our renewed efforts."
British virologist Jonathan Stoye, who co-authored a supportive commentary that ran in the same 2009 issue of Science, wrote in an email that the retraction comes as no surprise. "The writing has been on the wall for over a year now, and there simply is nothing left," he wrote.
"I don't think it was anyone's fault," wrote Stoye, who dove into researching the link after the 2009 paper was published. "Perhaps we could have sorted things out faster, but it was potentially very important and I think that everyone who became involved went into the affair with their eyes open."
Patients' reactions varied. Many have long given up on the idea that XMRV played a role in their illness. K. Kimberly McCleary, president of the CFIDS Association of America, tried to find a silver lining. "The heightened visibility that has resulted from this high-profile research has drawn new scientific and media interest to this serious, complex condition," she wrote in an email.
Others online viewed the retraction as part of a large, complex conspiracy theory against CFS patients. "We know the truth, and so do they," wrote one commenter on mecfsforums.com, an online patient community. "That's what (they're) afraid of."
At the center of the controversy is Mikovits, the scientist hired to be director of research by WPI, which was founded by the parents of a woman with CFS.
Almost immediately after the Science paper was published, some patients showered adulation on Mikovits. They wrote to her, crowded her at conferences and set up a defense fund when she ran into legal trouble. One patient signed message board postings "In Judy We Trust."
Mikovits proved controversial. Shortly after the paper came out, she spoke at the Autism One conference in Chicago, joining a lineup of speakers that included disgraced autism researcher Andrew Wakefield, who had lost the right to practice medicine in Britain for serious professional misconduct. There she linked XMRV to autism, a baseless assertion that has since been picked up by some in the autism community.
Earlier this year, the Tribune reported that Science was investigating whether data in a figure in the original paper had been manipulated after an Oklahoma graduate student, Abbie Smith, pointed out that Mikovits had presented the same figure twice — once in the Science paper and once at a conference — but with different labeling.
Bradford, Science's executive editor, said Mikovits explained the problem as an "honest error."
In September, WPI fired Mikovits and later filed a civil lawsuit alleging that Mikovits possessed key lab notebooks and other property belonging to the institute. A WPI employee filed affidavits alleging that Mikovits had instructed him to take the notebooks from WPI and hand them over to her.
Just before Thanksgiving, Mikovits was arrested in California and spent five days in jail. An arrest warrant issued by University of Nevada at Reno police listed two felony charges: possession of stolen property and unlawful taking of computer data, equipment, supplies or other computer-related property.
A spokeswoman for WPI said Mikovits returned some but not all of the lab notebooks, and that when she returned one computer, its hard drive had been wiped clean. Another computer is in police custody, the spokeswoman said.
On Monday, a Nevada judge granted a default judgment in the civil lawsuit in favor of WPI, ordering Mikovits to pay attorneys fees.
Ivan Oransky, co-founder of the website Retraction Watch and executive editor of Reuters Health, said the story is unusual but also familiar — a scientist who thinks she has found something, becomes a believer, gathers people behind her cause and then, once questions are raised, finds it hard to back down.
"Obviously, it is highly unusual for it to involve jail time," he said. "It speaks to the powerful drive of personality."
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