Sunday, December 18, 2011

Whittemore Peterson Institute vows to get past setbacks

Whittemore Peterson Institute vows to get past setbacks
Written by Lenita Powers
9:01 PM, Dec. 17, 2011

The Whittemore Peterson Institute for Neuro-Immune Disease in Reno
made headlines around the world in 2009 when news spread that its
researchers had discovered XMRV, a new retrovirus that might lead to
breakthroughs in the treatment of chronic fatigue syndrome and other
neurological diseases.

Two years later, aspirations of Reno becoming the mecca of a medical
breakthrough that could lead to treatment for chronic fatigue, an
illness that affects an estimated 17 million people worldwide,
evaporated when the research was discredited.

But the latest blow came this year when Dr. Judy Mikovits, the
Whittemore Peterson Institute's lead researcher behind the discovery
of XMRV, was fired in September for "insubordination and insolence."

In November, she was arrested on felony charges for allegedly
enlisting a fellow researcher to steal research notebooks and other
proprietary materials from the institute.

Annette Whittemore, president and founder of the institute, calls the
discredited research and Mikovits' arrest "a bump in the road" that
will not stop the institute's commitment to finding the cause and, she
hopes, a cure for chronic fatigue syndrome.

"The whole issue, until it is resolved, has a lot of people confused
and wondering whether we will be going forward and whether the federal
government is still going to be committed," she said, referring to
federal research grants and other funding. "There is more federal
funding for this disease than ever, and they're deeply committed."

Two current grants from the National Institutes of Health totaling
about $660,000 were made to the WPI, not to Mikovits, Whittemore said,
so those funds will remain with the institution.

More research under way

The WPI is continuing its research into the underlying causes of
neuroimmune diseases, including finalizing two research projects
involving gamma retroviruses and several studies related to the innate
immune system.

"We're as committed as ever," Whittemore said. "Ultimately, this
institution is looking for the right answers, and nothing else
matters. So we are going to continue to do the good work and find the
answers to the best of our ability and make sure others can reproduce
and confirm that good work."

Meanwhile, the implosion of the institute's research with XMRV and the
firing of Mikovits has frustrated chronic fatigue syndrome patients.

"I was cautiously optimistic at beginning," said 73-year-old Penny
McCracken, a Fallon resident who has struggled with the illness since

"I'm just kind of resigned now," she said. "It's like, 'Oo-ha, here we
go again.' We've seen promising things fall apart before."

Hurtful comments

Whittemore is keenly aware of the disappointment, anger and even
mistrust voiced by people with chronic fatigue syndrome who have
commented on WPI's website, blogs and other sites on the Internet. In
a recent interview at the institute's office, she recently addressed
those comments as well as what she said was the real reason Mikovits
was fired.

At the nearly two-hour interview, Whittemore was joined by Vincent
Lombardi, who has replaced Mikovits as the WPI's lead researcher.
Whittemore refuted claims being made on the Internet that Mikovits was
fired because the Whittemore family was trying to make money from
tests being conducted to detect XMRV in patients with chronic fatigue,
but Mikovits opposed the $400 to $650 cost for the tests as being too

Whittemore said WPI did not receive funds from the tests, and she said
the comment by one person on the Web who called the Whittemores greedy
was "very hurtful. Our family has given millions of dollars over the
last 40 years in support of charitable organizations, including WPI,"
she said.

VIPdx, the Reno laboratory that conducted the tests, is a privately
owned laboratory and is not affiliated with WPI, Whittemore said.
VIPdx did pay to license the use the technology from WPI to do the
testing, but that money was used by WPI to help fund its research.

And, despite news reports to the contrary, Mikovits was not fired
because she refused to share her research cell lines with other WPI
scientists, Whittemore and Lombardi said.

"In fact, those cell lines weren't shared," Lombardi said. "They
belonged to me, and she took them."

Lombardi said he had asked Japanese researchers who had built a cell
line to share it with him.

"When you publish research using a cell line you have developed, then
you're kind of obligated to share it with anybody who wants to use it,
and they said they would be happy to do that," he said.

Lombardi said the package with the cell line has his name on it, but
it apparently was sent to Mikovits' laboratory.

"She took them and never told me they came. When I called FedEx to
track them down, I found out that she had them. I asked her for them
back, and she said 'no' when they weren't even hers. So I talked to

Whittemore said she confronted Mikovits, who refused to return the
cell line to Lombardi, so she fired her for insubordination.

"And what she did interfered with (Lombardi's) ability to complete his
study," Whittemore said.

Petitioners support Mikovits

Mikovits, who is facing a civil lawsuit and criminal charges filed in
Washoe District Court, could not be reached for comment. Her lawyer,
Scott Freeman, also declined to discuss his client's case.

And researchers who had worked with her at the National Cancer
Institute or were listed as co-researchers on the XMRV article
published in Science refused to return telephone calls or hung up when
they were contacted by the Reno Gazette-Journal.

However, Orlando, Fla., resident Patricia Carter has created an online
petition in support of Mikovits that garnered about 380 signatures,
which Carter said would be sent to the U.S. Senate and the Whittemore
Peterson Institute. The petition calls for the institute to "treat
Mikovits fairly," return to her any research material that was hers
and refrain from taking any legal or other action that would
"intentionally damage Dr. Judy Mikovits' reputation of credibility."

However, Whittemore said Mikovits had signed a contract stating that
all research material belongs to the institute.

Peterson's new center

Earlier this year, a new research player came onboard in search for a
cause and treatment for neuroimmune diseases.

Dr. Daniel Peterson, the doctor who treated hundreds of Chronic
Fatigue Patients during an outbreak in Incline Village in the 1980s,
resigned from the Whittemore Peterson Institute that bears his name
and opened his own nonprofit research foundation in Incline Village.

Neither Peterson nor the director of the Simmaron Research Inc.
returned repeated telephone calls, but the research foundation's
website cites its mission as "playing a key role in bringing science
to the clinician to better diagnose, treat and manage patients" who
have chronic fatigue syndrome and myalgic encephalomyelitis.

Simmaron Research is working in collaboration with Sonya Marshall and
colleagues at the Bond University of Australia and Konnie Knox with
the Wisconsin Viral Research Group.

K. Kimberly McCleary, president of the Chronic Fatigue and Immune
Dysfunction Syndrome Association of America, said the high-profile
split with Mikovits at the Whittemore Peterson Institute, the
investigation by Science into the XMRV research paper and ensuing
legal actions "are of deep concern" to many of those in the patient
and scientific communities.

"Because of the hope that XMRV raised for better care, Dr. Mikovits
and the WPI have both attracted considerable support that is now being
tested as details of civil and criminal charges are made public,"
McCleary said. "We remain concerned for the well-being of all who are
affected by this dispute and hope that the various investigations will
yield an equitable resolution."

She said her organization will continue to focus on research to
improve the diagnosis and treatment of chronic fatigue syndrome, "and
efforts to end the life-altering disability, stigma and isolation CFS

For 17-year-old Rebecca Ghusn of Reno, who suffers from chronic
fatigue syndrome, the failure to link XMRV to her illness is just
another false lead in the scientific hunt to find a cause and a cure.

"You always hope something will happen when they find a lead, but they
had lots of leads, so this is just one step forward and two steps
back," she said. "And I think the whole XMRV thing was blown out of
proportion, but, yes, it was disappointing."

UNR research untainted

The WPI is not part of the University of Nevada, Reno, but the
institute's office and laboratories are housed in UNR's Center for
Molecular Medicine, a state-of-the-art facility that opened August
2010 and to which the Whittemores donated an undisclosed amount of

But the widely reported fact that the XMRV research has been
discredited and the lawsuits pending against Mikovits that have now
enveloped WPI won't impugn the credibility of the research being
conducted by the university's scientists, said Marc Johnson, UNR's
interim president.

"The Whittemore Peterson Institute is located on our campus, although
it is independent of the university," he said. "The institute is in
the midst of a challenging time, and the university is noted in many
media reports as the location of the institute. However, this
geographic relationship does not detract from or even relate to the
outstanding caliber of work being done by our university researchers."

Johnson said Annette and Harvey Whittemore have been good friends of
the university and have made significant contributions to the
community and state.

"We wish them well in their scientific endeavors," he said.


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