Judy Mikovits -Research into ME/CFS Turned into an Ugly Figh

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THE DAILY BEAST

HEALTH

How Research into Chronic Fatigue

Syndrome Turned into an Ugly Fight

Jul 23, 2012

How did a star researcher into the medical

mystery of chronic fatigue syndrome end up in

jail and unemployed? For the first time, Judy

Mikovits tells her story.

On Nov. 9, 2011, Judy Mikovits, a well-known

chronic fatigue syndrome researcher at the center

of one of the strangest scientific dramas in recent

memory, found herself devising the following plan.

There was a man in a car in front of her house in

Oxnard, Calif., waiting to serve her with a

temporary restraining order demanding the return of

stolen property to the Whittemore

Institute in Reno, Nev., from which she recently

had been fired.

She took the small boat moored behind her house

down into the harbor, where she got onto a friend’s

sailboat and hid there for five days.

By Nov. 14, Mikovits was back at her Ventura

County house, having retained a lawyer who

assured her that there was no warrant out for her

arrest, Mikovits told me last month in her first

interview since her legal trouble began. Yet within

one week of that phone call, her doorbell rang. Her

husband, Nolde, answered it, and a female

voice spoke from the threshold.

“She said, ‘Is Dr. Judy in? It’s , I’m a patient,

she knows me, she said I could come by any

time,’ ” Mikovits recalled. “And I said, ‘It’s okay,

, I’ll take it.’

Mikovits’ arrest, for possession of stolen

property-her own research notebooks from the lab

where she worked-was an unlikely outcome for

the 54-year-old. Having spent 20 years at the

National Cancer Institute, Mikovits is a seasoned

research scientist, an expert on viruses. In 2006

she accepted the position of research director at

the brand new Whittemore Institute, a

private lab that had been co-founded by Annette

and Harvey Whittemore, one of the most politically

connected couples in Nevada. The

sometimes-debilitating disease she went to study,

chronic fatigue syndrome (CFS), has long baffled

scientists, and sufferers were desperate for

information. The Whittemores themselves had

founded the institute because their daughter,

, now in her thirties, has struggled with CFS

for years.

What happened there sounds like fiction: a

scientific breakthrough, suspicion of contamination,

a well-meaning scientist, a nonprofit institute, a

fee-for-service diagnostic lab, and a legal battle that

is still unfolding. In the process, Mikovits plunged

from a leading light in the fight against a

mysterious medical condition to an unemployed

woman with a mark on her name in the world of

science.

***

When I met Mikovits last month, she greeted me in

the front yard of her twin sister’s home in a

pleasant neighborhood in suburban Virginia. She’d

flown in the night before, one day after the criminal

charges against her were dropped.

Mikovits is blond and wind-blown, like she’s just

stepped off a boat. When we met, she was

barefoot and dressed in ripped Levis and a T-shirt.

An hour into our interview, she cheerfully cracked

open a beer and stuck her favorite baseball cap on

her head-the same cap, she said, that had been

taken away from her in jail.

For a person who’s just been through a year of legal

woes, she’s upbeat and garrulous. And after more

than six months of following strict orders from her

legal team not to comment on the charges against

her, she is ready to talk.

Mikovits is warm-spirited and blunt, with what

appears to be a blind spot when it comes to other

people's motives, a weakness that can lead her to

extremes of both trust and suspicion.

Mikovits has had a varied career, jumping between

research and drug development jobs because, she

says, she has a habit of being a perpetual “trouble

maker,” speaking up about ethical breeches, often

to punitive consequence.

In 2006 she turned to chronic fatigue syndrome, a

disease that was first accepted as an official

diagnosis in 1987 but from the start was poorly

understood and hard to identify. Its symptoms

include extreme exhaustion, heart and respiratory

problems, and muscle and joint pain. By some

estimates there are 17 million cases today, but still

no known cause and no sure-fire test. Many

sufferers are frustrated and demoralized after years

of encountering a dismissive or baffled response

from doctors, who frequently chalk up their

ailments to psychological origins.

Mikovits met Annette and Harvey Whittemore in the

summer of 2006. Harvey Whittemore, a former

lobbyist, was a major contributor to and close

friend of Sen. Harry Reid. In the Nevada press,

Harvey Whittemore’s name has for years been

followed with words like “kingpin” and “power

broker.” In October 2006, the Whittemores offered

Mikovits the job of research director of their newly

inted lab. Mikovits had the impression that, she

says, “these are well-meaning people but my god,

they don’t know how to do real research. And I

thought I could help and so did they.”

The first years of her stint at the WPI were smooth,

Mikovits says. She says she was close to the

Whittemores, whom she regards as being “like the

Kennedys” in their closeness, charisma, and

power. (Annette Whittemore, citing the advice of

her lawyer, declined to comment for this article.

Harvey Whittemore’s lawyer, Dominic Gentile, said

his client was unavailable for comment.)

In 2009, Mikovits published her breakthrough

finding. Testing 101 samples from patients with

CFS, Mikovits and her co-investigators reported

that 67.5% percent of them were infected with

XMRV, a retrovirus never before known to infect

humans. It was a discovery with huge implications.

Patients might be able to get better by taking the

same anti-retroviral drugs that have helped treat

HIV/AIDS. Never before had there been such a

promising starting point for diagnosing chronic

fatigue syndrome, much less developing a way to

treat it.

Mikovits submitted the paper to Science, a

preeminent scientific journal, where it was peer

reviewed. When it came out in the fall of 2009, she

was an instant celebrity, traveling the world,

meeting patients, presenting data.

Her research brought luster to the WPI-and cash,

too. In 2009, WPI licensed its diagnostic test for

chronic fatigue to a clinic next door, VIP Dx. “We

structured the licensing contract to be sure that

any and all profits that might emerge at VIP Dx

from XMRV testing come directly back to WPI to

benefit the research program,” Annette Whittemore

said in a press release in 2009. Patients were

charged somewhere between $400 and $550 per

test, and the lab tested at least hundreds of

patients between 2009 and 2011, though likely

significantly more.

The move raised eyebrows within the scientific

community. “The VIPdx was very problematic,”

said Coffin, a scientist at the National Cancer

Institute, whose lab is one of several that has

attempted to replicate Mikovits’ XMRV findings,

“That they would be offering, commercially, this

test on what are basically preliminary research

findings from their group ... is obviously very

questionable.”

Meanwhile, other research groups around the

country were trying to replicate the 2009 results,

but in the two years that followed, almost all had

failed. The word “contamination” began to surface

more and more frequently.

In the summer of 2011, Mikovits and her young lab

assistant, Max Pfost, began poring through their

notebooks, trying to find where such a contaminant

might have entered their process.

In July, she says, she found it-an entry from

March 2009 indicating that a culture of the XMRV

virus had been placed into the same ice chest with

the rest of the lab’s blood samples. Mikovits says

she was out of town the day this occurred.

In July 2011 she told Harvey Whittemore of the

potential contamination, she says, and expected

that the VIP Dx lab would cease testing patients

for the XMRV virus. “I just kept saying, stop it, stop

it, stop it. We have to sort this out,” Mikovits says.

According to Mikovits, the testing did not stop. And

after a tense summer, she was fired in September.

She says she was back home in California the day

after her firing when her cell phone rang at the

crack of dawn. It was Pfost, she says, calling to

say that her notebooks, flashdrives, and other

experimental records at her lab had been rifled

through.

Mikovits was worried most about the notebooks. “I

said, ‘Max, secure them. It’s obviously been

ransacked.’ … I said, ‘You have to secure

them-it’s chaos. Take ’em home, take ’em to

your mother’s house.’ ”

Pfost declined to comment on the substance of this

article, but in a signed affadivit, given in November

2011 shortly before Mikovits’ arrest and used by

the WPI in its civil case against her, Pfost says he

removed the notebooks from the lab at Mikovits’s

behest and hid them at his mother’s house until

Mikovits returned to Reno the following month.

According to Mikovits, on Oct. 16 she returned to

Reno to gather her remaining possessions. Pfost

picked her up at the airport and pointed to a big

birthday bag in his backseat of his car. He had just

turned 30. The notebooks are in there, she recalls

him saying.

They returned to her condo and started packing.

The next day when she woke up, she says, Pfost

was gone and the birthday bag was empty by her

front door. She says she assumed that Pfost had

taken them-to photo copy or to be safe-so she

finished packing her things, loaded the cardboard

boxes into her car, and left for California.

On Nov. 4 the WPI filed a legal complaint that

marked the official beginning of its civil lawsuit

against Mikovits, alleging among other things

breach of contract and that Mikovits was in

wrongful possession of intellectual property-

ncluding notebooks, flashdrives, and e-mails-that

“severely hampered” the WPI’s ability to continue

its research.

One week later came the man with the papers. And

the five days on the boat. And the long weekend in

prison.

According to Mikovits, it was while she was in jail

that her husband received a call from Pfost, who

told him that the notebooks were in California, with

Mikovits. Sitting in her jail cell, Mikovits thought of

two unpacked boxes stuffed into her closet. She

told her husband to look there. He did, found the

notebooks, and turned them over to the police.

Mikovits was released from prison.

One month later, Science fully retracted her paper,

a decision in line with the mounting evidence that

the Mikovits findings were an accident. New

research suggested that XMRV might not even be

a naturally occurring retrovirus at all, but rather an

artifact constructed in a lab by prostate cancer

researchers.

Last month, the Reno district attorney dropped the

criminal charges against Mikovits due to

insufficient evidence. The civil suit has persisted,

although the Whittemores now find themselves with

other legal issues to deal with: Harvey was indicted

last month by a grand jury on felony charges

including allegedly making illegal donations to a

political campaign and lying to federal officials. He

has pleaded not guilty.

It’s not clear whether or not Mikovits knew she had

the notebooks. She says she didn’t. It is, however,

still unresolved whether it would even be

inappropriate-much less illegal-for her to have

had them. Mikovits was working partially on a

federal grant on which she was the primary

investigator, and keeping copies of her research

would be standard in her field.

“She must have copies of the records of her work.

Every scientist must have those. Otherwise, you

can’t answer questions that might come up,” says

Ian Lipkin, an epidemiologist at Columbia

University.

He would know. At the moment, Lipkin is leading an

NIH-funded effort to replicate the XMRV findings.

For all the allegations swirling in Reno, the scientific

question still lingers. Did Mikovits in fact discover a

long-sought-after key to the mysterious illness? Is

any part of her 2009 publication of value? The NIH

has put $1.3 million dollars into the research,

which is being conducted as a collaboration

between several different labs, and includes

Mikovits’ own contribution.

The results are expected soon.