Judy Mikovits describes herself as a "rock star scientist." It's not a great way to endear yourself to other scientists, perhaps, but it typifies her style—and she does have a point. She is a biochemist who worked for more than 20 years at the US National Cancer Institute and had been at the forefront of HIV/AIDS research. She's published more than 50 papers in respected science journals, the achievement by which scientists measure their peers.
Then, in 2009, she exploded out of the backwaters of academia and into the world's media with the claim that she had discovered the cause of chronic fatigue, or myalgic encephalomyelitis (ME). Far from being a 'yuppie flu' or something conjured up in the minds of the lazy and depressed, as so many sufferers had been defined, it was caused by a retrovirus.
In tests on 101 ME patients, Mikovits said that 67 percent had evidence of the mouse retrovirus XMRV (xenotropic murine leukemia virus-related virus), which was seen in just 4 percent of the 218 healthy controls.
The discovery had profound implications. Not only had the likely cause of chronic fatigue been found, healthy people were also carrying the virus, which means they could be spreading it through blood donations or even organ transplants. If her calculations were correct, around 10 million healthy Americans were carriers of XMRV.
Although by that time she was based at an obscure research center set up by a political activist and lobbyist in Reno, Nevada, the paper was published by Science, arguably the world's most prestigious academic journal.1
An accompanying editorial by John Coffin, a virologist at Tufts University in Boston, gave the controversial theory a seal of approval. "There are several lines of evidence that transmission happened in the outside world and was not a laboratory contaminant," he wrote, foreseeing the obstacles ahead.
For a short while, Mikovits was catapulted to the highest reaches of scientific stardom, as chronic fatigue groups and patients celebrated the discovery and donations rolled in to the Whittemore Peterson Institute for Neuro-Immune Disease, where she worked. At last, people with the chronic disease could point to a real cause that wasn't just "in their head"—and there was the real possibility of a cure with AIDS drugs that were successfully tackling the HIV retrovirus.
Not so fast
But it started to unravel, and in sensational ways. First, other scientists said they couldn't replicate her findings—in other words, they weren't seeing the retrovirus in the chronic fatigue sufferers they tested.
Mikovits admitted that this could be because she hadn't followed the exact same protocols established by the scientists who discovered the XMRV retrovirus back in 2006, but the dozen labs that couldn't see a connection thought it was down to a contamination of blood samples.
The editors of the journal agreed. Chalking it all up to a case of bad science, they retracted Mikovits' paper and thought it would be filed away as yet another false trail on the path to understanding chronic fatigue.
Robert Gallo, a leading researcher into HIV-AIDS with whom Mikovits had crossed swords in the past, weighed in. "All of it's a waste of money, and it's wrong. It's like a bad dream," he opined.
But Mikovits was unrepentant as study after study failed to connect XMRV to chronic fatigue. In one, Swedish researchers were unable to detect the retrovirus in blood samples taken from 78 ME patients,2 while other researchers claimed that any sign of the retrovirus was likely down to contamination in the laboratory.3 Researchers at Tufts University in Boston were more definitive: what Mikovits and her colleagues had seen was certainly the result of contamination.4
Others were seeing similar patterns to what Mikovits and her team had witnessed, but their voices were being drowned out. One, Harvey Alter, an infectious disease specialist at the US National Institutes of Health (NIH), stated in a 2010 presentation that "the data [in the Mikovits study] is extremely strong and likely true, despite the controversy. . . we (the Food and Drug Administration and NIH) have independently confirmed [Mikovits'] group findings." When pressed later, Alter said he shouldn't have said what he did, and that he had jumped the gun.
Coffin, who had written the editorial for Mikovits' original study, even began to feel sorry for her. "I began comparing Judy Mikovits to Joan of Arc. The scientists will burn her at the stake, but her faithful following will have her canonized," he said.
Crime or conspiracy?
And the gap between her followers and critics widened in 2011, when the whole saga took an extraordinary turn. In November, two months after Mikovits had lost her job at the Whittemore Peterson Institute, three deputies from the local sheriff's office arrived at her home with a search warrant. They were looking for the research notebooks and laptop she'd taken from the clinic when she had left. After they found them, Mikovits was arrested as "a fugitive from justice" and held for five days in the local jail under suicide watch. She didn't get back her laptop for nearly a year, while criminal charges against her were dropped the following year.
Was this all down to a charge of simple theft, or was it an attempt to gag Mikovits and close down the whole XMRV project? Mikovits claims the latter, as she says several attempts were made in the prison to have her publicly recant her research findings.
But why, when so many researchers had been doing the job so well for her? There are several theories, and they fuel the suspicions of a conspiracy.
In 2009, Mikovits didn't just think that the XMRV retrovirus caused chronic fatigue; she also thought it was responsible for autism. This was a no-go zone for most scientists, especially after the Andrew Wakefield fiasco, when he linked the disease to the MMR vaccine and was later discredited. "My real crime was saying that if this retrovirus was causing chronic fatigue in adults, it might be causing autism in children," she says in her book, Plague (Skyhorse Publishing, Nevada, 2014).
And this is where Wakefield's and her theories merge. If a mouse retrovirus really was in the blood of the chronic fatigue sufferers, how did it get there? From vaccinations, she believes.
Back in 1934, one of the first recorded outbreaks of chronic fatigue happened among 198 doctors and nurses in Los Angeles—after they had been given an early version of the polio vaccine.
The vaccine had been grown in mouse tissue, a practice that continues to this day. "In 1994, the scientific community reported the very real possibility that growing human viruses in animal tissue and cells used every day in laboratories around the world, then re-injecting that material back into humans, could introduce new animal viruses into the human population. In fact, our research about the XMRV retroviruses in 2011 showed that this catastrophe had already taken place.
"It is such a simple idea, so easy to convey, that if people really began to focus on it, the entire vaccination program would crumble," she wrote.
Mikovits claims that while she was being publicly discredited as a fraud, in private, blood banks across the US were quietly "spending tens of millions of dollars" to purchase a system, called the Cerus Intercept, that would decontaminate their supplies.
Scientists now accept that Mikovits was probably on the right path, and that a retrovirus is behind chronic fatigue, even though it's not XMRV. For Mikovits, the stakes have just gotten much higher: not only is XMRV the cause of chronic fatigue, it's also infected millions of others who are unwitting carriers, she maintains. And, more devastating still, if a mouse retrovirus really has entered the human race via vaccines, we truly are in "a doomsday scenario," as one of her supporters put it.
Judy Mikovits, an established HIV/AIDS researcher, shook the scientific establishment when she reported that chronic fatigue was caused by a virus that could be affecting millions. Although her research has fallen under a cloud of controversy, her theories remain at the forefront of chronic fatigue research.
What's a retrovirus?
Retroviruses are so called because they do the reverse of normal viruses: most viruses are composed of DNA that converts to RNA, but a retrovirus is made of RNA that converts to DNA.
Retroviruses are known to cause only a few diseases, AIDS from the HIV retrovirus being the best known, and a few types of cancer.
The XMRV retrovirus (see main story) was discovered only in 2006 by researchers at the University of California at San Francisco and was quickly associated with prostate cancer, although a causal link between the two has never been proven.
Aside from chronic fatigue, it's also been linked to autism, fibromyalgia, multiple sclerosis and Parkinson's, but tests have failed to establish a definitive connection.
What's chronic fatigue?
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME), is a crippling, life-altering condition that started to grab attention in the late 1970s.
Its symptoms are often described as flu-like but far more extreme, and include weakness, an inability to move, and muscle pains.
It can come on suddenly, and scientists suspect it is the result of a viral infection. However, the virus has not been found, which has led health agencies—and some doctors—to conclude that it is all in the sufferer's head.
The US Centers for Disease Control and Prevention (CDC) went as far as to state, after failing to establish a cause, that the CFS/ME epidemic was the result of hysteria. Even as recently as 2010, the CDC accused people with CFS/ME of having "paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disorders."
For a condition that afflicts around 2 million Americans and 250,000 Britons, that's an awful lot of paranoid behavior.