Tuesday, November 3, 2009

Numerous articles from Reno about XMRV

There is a main article, 'Medical breakthrough puts Reno in
spotlight', plus an absolute ton of other articles by the same
reporter, I guess she got so much info it wouldn't all fit into one!
They're all good reads though.



'Medical breakthrough puts Reno in spotlight'
Medical study buoys patients, earns scientists global acclaim
By Lenita Powers • lpowers@rgj.com • October 31, 2009

Judy Mikovits remembers that "eureka" moment when she realized that
she and her team of researchers at the Whittemore-Peterson Institute
in Reno had discovered a new retrovirus that could lead to a possible
treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

"It was January 22, and we were in a San Diego restaurant called the
Yard House," said Mikovits, who had gone there with fellow scientist
Vincent Lombardi to present the results of their research to Frank
Ruscetti and Robert Silverman, two of the world's leading virologists.

"We kept waiting for them to say something," Mikovits said. "I was
nauseous. Bob (Silverman) waited a long a time, and then he looked up
and said, 'Well, this is going to change their world.'"
And it has.

The research resulted in a paper that was published last month in a
prestigious scientific journal, which set off a flurry of media
coverage that put the Whittemore-Peterson Institute and Reno's name in
reports from the New York Times, the Wall Street Journal and the BBC.

The institute's finding also heralds the prospect of money to be made
from intellectual property that could be used to develop drugs and a
vaccine, and of prestige for Reno and Nevada as scientists from around
the country and the world take part in future research, Mikovits said.

This breakthrough discovery of a new infectious human retrovirus in
Chronic Fatigue Syndrome patients also holds out hope to those who
suffer from other illnesses, including fibromyalgia, nongenetic autism
and possibly even some forms of cancer, WPI researchers said.

In addition to money and fame, the discovery of the new retrovirus
XMRV and its link to Chronic Fatigue Syndrome could provide the
medical world with the first means to diagnose those stricken by the
disease, Lombardi said.

"What makes this especially exciting is patients, who basically have
been ridiculed and poked fun at for having a disease that has been
given very little credibility, finally would have hope," Lombardi
said. "And it could lead to real treatment strategies."

'If we could develop a vaccine'
Annette Whittemore, founder and president of the Whittemore-Peterson
Institute, said the recent findings could lead to drugs to treat
syndrome patients, but just as important, it also could mean the
development of a vaccine to protect others from the illness.

"The idea of another generation that could be so deeply impacted ...
If we could develop a vaccine and actually stop that from happening,
it would be fantastic," Whittemore said.

The rate of the syndrome within families suggests it could be
transmitted more easily than previously thought, but additional
studies must be done to determine how the retrovirus passes from
person to person, Mikovits said.

"That's why the National Institutes of Health is interested. There's
some misconception that just because XMRV is an HIV-related
retrovirus, it's sexually transmitted, but that's not been shown yet,"
she said. "What our paper shows is we can get it out of the blood, but
more research is needed."

She cautioned that just because someone is found to have the
retrovirus doesn't mean they will develop the symptoms of the
syndrome. "People who are resistant, their immune systems could be so
strong that, although they're replicating the virus like mad, they may
never get sick because they can keep the virus down," Mikovits said.
"So we're looking at that, too."

Further research also is needed to determine if XMRV causes the
syndrome or if the retrovirus sets up an immune deficiency that
results in susceptibility to the syndrome and possibly other diseases
such as autism or some cancers.
"We saw (the retrovirus) in 30 percent of a small number of autistic
patients we looked at," Mikovits said. "That's 30 percent, but if one
in about 100 children have autism, that's a lot."

The XMRV retrovirus also was found in 3.7 percent of the control group
of 218 healthy people who did not have Chronic Fatigue Syndrome.

Mikovits said extrapolating that percentage to the rest of the nation
could mean as many as 10 million people in the United States could
have the retrovirus, but it might never result in illness among those
with strong immune systems.

Vaccines, treatments
If further research demonstrates XMRV causes the syndrome, then drugs
to treat it and a vaccine to prevent its spread could be developed,
Mikovits said.

The National Cancer Institute already has started working on a
vaccine, and clinical trials are expected to begin at the
Whittemore-Peterson Institute sometime next year, Mikovits said.

The world's largest pharmaceutical companies have been calling the
institute asking if they can test their lines of a drug now used to
treat patients with HIV, another retrovirus, to see if their
anti-viral drugs can be adapted to treat Chronic Fatigue Syndrome

"They want us to send them the (XMRV) retrovirus so they can screen
huge libraries of compounds and see what they have that could work,"
Mikovits said. "They already have drugs to treat HIV, so they could
redesign a compound for the XMRV virus. Since they already have FDA
approval, they could get something out to people fast."

Among the drug companies lining up are LabCorp and Quest, two of the
largest diagnostic companies in the world, Mikovits said.

The drug companies will pay for the Reno institute's cell lines, the
established cultures that will grow the XMRV retrovirus so they can
test their antiviral drugs on them, she said. "I think this will bring
money into the state right now," Mikovits said. "Investigators will
want to come to the University of Nevada, Reno to do science, and we
will have to hire doctors and nurses for the clinical trials."

Future research and biotechnology stemming from the initial study is
expected to generate more research and intellectual property.

"And the Whittemore-Peterson Institute is nonprofit, so we can put it
all back into the patients," Mikovits said.
Lombardi, Mikovits' colleague at the institute, said the recent media
attention has overlooked the critical contributions made by UNR.

"They haven't gotten credit for the resources and the lab space and
support they have given, without which this never would have
happened," Lombardi said.

"For the university, Reno and the whole state, it will put us on the
map," Mikovits said. "It's already doing that."


Daughter's illness led family to seek help, start institute
By Lenita Powers lpowers@rgj.com

The vision to create the Whittemore-Peterson Institute for
Neuro-immune Disease in Reno began when the parents of a young girl
debilitated by illness joined forces with an Incline Village doctor
who became renowned in the field of Chronic Fatigue Syndrome for the
cluster of cases he treated in 1984.

"Andrea really was the inspiration for this place," said Annette
Whittemore, founder and president of the institute, of her now
31-year-old daughter, Andrea Whittemore-Goad, who still suffers from
the illness.

Whittemore said she and her husband, developer and former lobbyist
Harvey Whittemore, became frustrated by the lack of answers from
doctors who struggled to treat their daughter, who first started
showing symptoms of the syndrome at age 12.
With the support of other medical professionals and families affected
by the illness, the Whittemores and Dr. Daniel Peterson of Incline
Village established the Whittemore-Peterson Institute in 2005 to help
millions of patients suffering from Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome, fibromyalgia and related illnesses.

"The institute also grew out of Annette's desire to honor Dr. Peterson
for his life's work," Harvey Whittemore said.
In 2005, the Nevada State Legislature approved $10 million toward the
construction of a new research facility at the University of Nevada,
Reno to further a joint project with the University of Nevada School
of Medicine and the Whittemore-Peterson and Nevada Cancer institutes.

Harvey Whittemore said his wife has been the driving force behind
making the institute a reality, but he remembers the day he became
determined to see the project through.

"I came home, and Andrea was on the couch, and the lymph nodes in her
neck and shoulder were so swollen, and her heart was racing over 140
beats a minute. I just said, 'Andrea, I don't need any more signs as
to how sick you really are.' And from that moment, it became part of
our life's work, and I didn't care what people said or who supported
or did not support what we were going to do."

The institute will have a new home next year when it moves from its
one small laboratory and tiny office in the Applied Research Facility
at UNR into a new $86 million state-of-the-art research facility
scheduled to open in the fall on the north end of the university.

The Center for Molecular Medicine will house the university's research
programs in cancer biology, infectious disease, cardiovascular
disease, gastrointestinal disease and neurosciences. A portion of the
new building also will serve as the headquarters for the
Whittemore-Peterson Institute and UNR's Sanford Center for Aging.

Harvey Whittemore said his family has spent "millions" on the
institute, but he said he doesn't know the exact amount.
The institute is receiving mainly positive responses to the research
paper published last month about the infectious retrovirus found in a
large percentage of Chronic Fatigue Syndrome patients.

The institute is nonprofit, and donations are tax deductible.
Whittemore said the biggest benefit will be to Reno and Nevada.
"This is really a world-changing event. I don't think people realize
how amazing it is that this happened in Reno," he said. "But when you
see the stories in the Wall Street Journal and in the New York Times
and the worldwide coverage from the BBC, it's amazing."

The Institute
Established: 2005
the name: Named for the Whittemore family and Dr. Daniel Peterson, an
Incline Village doctor who is the institute's medical director.
Funding: The Nevada Legislature allocated the institute $400,000 in
2007 and $600,000 in 2008 for operations costs. The University of
Nevada, Reno gave the institute a $50,000 pilot grant in 2008.
Location: Now occupying a small laboratory and an office in the
Applied Research Facility on the UNR campus, the institute will occupy
a portion of the university's new Center for Molecular Medicine,
pictured above, when it opens next year.
Faculty/staff: Dr. Daniel Peterson of Incline Village; Judy Mikovits
of Reno and Nancy Klimas, a professor of immunology at the University
of Miami medical school and a consultant with the institute.
Scientific office staff: Mikovits, Vincent Lombardi and David Pomeranz.
Administrative staff: Klimas, conferences and think tanks; Michael
Hillerby, office of development; and Angelina Wyss, fundraising.


'I don't ever want to seem like I'm suffering from this disease'
By Lenita Powers lpowers@rgj.com

Andrea Whittemore-Goad may be the reason her parents decided to create
an institute to try to unlock the mysteries behind Chronic Fatigue
Syndrome, but an estimated 17 million people around the world also
stand to benefit.

The day after a respected scientific journal published the institute's
study that found an infectious retrovirus in a majority of Chronic
Fatigue Syndrome patients, Whittemore-Goad received a call from one of
those people.

"It was a woman from New Mexico, and she told me, 'You don't realize
what this means to me. For the first time in 18 years, I have hope. I
sat down and cried because after all the struggles, after all the pain
I've been through, I realized there is someone out there who cares and
wants to help me.'"

The study suggests but has not yet proven that the retrovirus actually
causes their condition. Much more research needs to be done, but for
the 31-year-old Whittemore-Goad, it has opened up a whole new world of

"This has brought attention that we never had before when it comes to
this disease," she said during a telephone interview from her Reno
home. "The Internet has brought a network of people together, and
we're all saying something has to be done now. We have kind of been
preaching to the choir all these years, but now the world is
listening. For the first time, they're hearing our cries for help."

Whittemore-Goad said she was about 11 or 12 when she first began
getting headaches and suffering from extreme fatigue that no amount of
sleep could relieve.

"I'd be in the classroom listening to the teacher, and I'd have to put
my head down on the desk and rest awhile," she said. "I had flu-like
symptoms, and my heart would race for no reason."

After years of being treated for the symptoms, she began seeing a
local homeopathic doctor, and by age 17, she started feeling well
enough to enroll at the University of Nevada, Reno.

But the university required she be current on her measles, mumps and
rubella vaccinations.

"I got the vaccination, and I relapsed and never recovered. My gall
bladder and appendix got infected, and they had to be removed. I also
was having chronic pain."

When she was 19, she began seeing Dr. Daniel Peterson in Incline
Village and with medication, her condition improved again by age 21.

"I moved out of home, and for the first time, I was independent and
could drive to the grocery store and do things I wasn't able to do
since 10 or 11 years old," she said. "I became a part-time yoga
teacher and got certified as an instructor."
But Whittemore-Goad had to go off her medication and had another
relapse two years ago. She began having seizures and went to a

"They haven't been able to get them under control," she said. "It's
been life-changing. I'm not able to go out of the house often, and I
have to have seizure medicine with me at all times."

Whittemore-Goad's health, like most syndrome patients, is cyclical,
with some good days among the bad.
But even on her wedding day last April, she had to have a nurse and
doctor present to take care of her and give her fluids intravenously.

That doesn't mean Whittemore-Goad sees herself as a victim, and there
are many moments of joy in her life, thanks mainly to her family and
Brian Goad, her husband of six months.

"The thing is, I don't ever want to seem like I'm suffering from this
disease, but rather that I have been surviving it and someday will
conquer it, and be able to live a normal life," she said. "I'd like to
go back to college, get a degree, become an elementary school teacher
and, one day, have a child with my husband."

She hopes that day will come sooner now with the research being
conducted by the Whittemore-Peterson Institute in collaboration with
the National Cancer Institute and the Cleveland Clinic.

"I have been so blessed because Brian and my family are so supportive,
but one of the biggest things I lost was my independence, and that has
been a hard struggle," Whittemore-Goad said.


Patients hope for vaccines; researchers eye links to other diseases
By Lenita Powers lpowers@rgj.com

As the news has spread that a retrovirus has been linked to Chronic
Fatigue Syndrome, people around the world who suffer from the illness
and similar neuro-immune diseases have been thanking the researchers
at Whittemore-Peterson Institute in Reno for giving them new hope.

"I used to describe having the syndrome as being akin to the sound of
one hand clapping," a woman wrote from London. "Well, now all those
hands are coming together in applause all around the world. I hope all
you brilliant people at the WPI can hear us cheering."

The discovery of a new infectious human retrovirus has prompted
positive reactions from patients, researchers and those suffering from
other illnesses. The next step for researchers is to determine if the
new retrovirus is the cause of the syndrome.
If it is, drugs and even a vaccine could be developed for syndrome
patients, and possibly for those who suffer from related diseases such
as autism.

Fred Friedberg, president of the International Association of Chronic
Fatigue Syndrome/Myalgic Encephalomyelitis, called the discovery of
the retrovirus "hugely exciting."

He said the study was the subject of a recent conference call among
the members of the international association, which is made up mainly
of professors, scientists and clinicians.

"We were discussing the implications of the findings and where it
could lead, and the research possibilities of therapy and a vaccine,"
said Friedberg.

However, Dr. William Reeves, who heads the research into the syndrome
at the Centers for Disease Control and Prevention, said the CDC would
use its own blood samples to try to confirm the results of the study
done by the Whittemore-Peterson Institute. "If we validate it, great,"
Reeves told a Florida newspaper. "My expectation is that we will not."

Reeves could not be reached for further comment.

Vincent Lombardi, a researcher at the Whittemore-Peterson Institute
and one of the authors of the research paper, said having the research
published in the journal Science, which is well-respected, underlines
the significance of it. "The one thing that makes our research so
credible is that there have been more than 5,000 peer-reviewed papers
on the syndrome, but they have never been published in the journal of
Science," Lombardi said.

Judy Mikovits, the lead researcher in the study, said their findings
also are being taken seriously by the rest of the scientific

"I've gotten more than 100 e-mails from physicians, and I've gotten
calls from the head of the Mayo Clinic and the clinical director at
Sloan-Kettering," she said. "Those people wouldn't take the time if
they didn't think this was a significant finding."
Mikovits said the Whittemore-Peterson Institute is working with
officials in other countries who want the blood samples of their
patients tested for the retrovirus.

"We've got about 500 samples from the United Kingdom, and we also were
approached by the head of the the syndrome organization in Spain," she
said. "We eventually expect to collaborate with many other countries:
Norway, Germany and others. Everybody is asking if we can test their
samples and asking how they can get in the clinical trials."


A brother's wish: 'I almost always wish for Becca to get better'
By Lenita Powers lpowers@rgj.com

When 9-year-old Benjamin Ghusn tosses a coin in a fountain and makes a
wish, he usually asks for the same thing: that his older sister won't
be in pain anymore

"I almost always wish for Becca to get better," Ben said recently as
he sat on the sofa in his family's southeast Reno home curled up next
to Rebecca, a petite 15-year-old who suffers from Chronic Fatigue
Syndrome. Her story is one that will be familiar to other people with
CFS and their families.

At age 11, she became ill with what appeared to be a severe case of
the flu. But this flu didn't go away and the symptoms persisted and
worsened. Rebecca grew so ill, she missed an entire year of school.

As she grew increasingly exhausted, at times to the point of fainting
and collapsing on the floor, her parents, Nancy and George Ghusn,
feared the worst.

Previous visits to a local pediatrician resulted in a battery of tests
but no diagnosis. Finally, the pediatrician told Rebecca's parents
that their daughter had psychological problems. She suffered from
depression and a phobia about going to school, the pediatrician told
her parents.

That didn't ring true for Nancy Ghusn, a Washoe District Court master.
Her daughter had been an A-student in the Gifted and Talented Program,
and she enjoyed school and the friends she had made there.

In desperation, Rebecca's parents finally took her to see Thomas
Klitzner, a pediatric cardiologist at the University of California,
Los Angeles, who told them their daughter had a classic case of
Chronic Fatigue Syndrome.

Then they learned about Dr. Daniel Peterson, who specializes in CFS,
and began taking Rebecca to the Incline Village physician's clinic.

"Until we found Dr. Peterson, we didn't know what to do," said George
Ghusn, owner of BJG Architects and Engineers. "We had a diagnosis but
we didn't know what to do."

"Oh, yes," Rebecca said. "Dr. Peterson has been a godsend."

But like all CFS patients, Rebecca still has her good days when people
can't believe there's really anything wrong with her.
And then there are the bad days.

"Sometimes I'm better and sometimes I'm not," Rebecca said. "When I'm
around people, I'll get all hyper and jittery but then I go home and
crash. Of course, I get really tired. Sometimes it feels like there's
something cold inside of me and I'm hollow inside. My temperature is
usually lower than 98.6."

Her father said his daughter occasionally will seem confused and have
trouble concentrating, a condition they call "brain fog."
"Yeah, it's horrible," Rebecca said. "And I get aches that feel like
my bone marrow turns to Blue Ice, that stuff you put in lunch boxes to
keep your food cold. My left knee bothers me, too, and I have aches
and pains. Sometimes I feel like I'm about 80 years old instead of
just 15."

The Galena High School sophomore said her immune system "crashed" and
she hasn't been able to go to school for the last couple of months.
She's had to have teachers for the homebound come to the house and she
takes a Latin class online.

Rebecca also suffers from a long laundry list of food allergies that
includs gluten, whey, pineapples, oranges, and onions.
It isn't any easy way of life, but George and Nancy Ghusn try to make
it as normal as possible for the family.

"We try to stay cheerful and we go on cruises so Becca can be with
other kids and see things without getting to tired," Nancy Ghusn said.
"It's kind of been our philosophy to live our lives as fully and
positively as we can."

George Ghusn said the family is "cautiously optimistic" about the news
last month about the Whittemore-Peterson Institute's study showing the
presence of a retrovirus in 67 percent of the CFS patients.

"Just because they found this doesn't mean that it will eliminate the
problem," he said. "Hopefully, it will lead to treatments that will

Symptoms of Chronic Fatigue Syndrome
A diagnosis of CFS should be considered in patients who have six
months or more of unexplained fatigue accompanied by other symptoms.
Primary symptoms: Impaired memory or concentration; exhaustion and
increased symptoms after physical or mental exercise; still exhausted
after sleeping; joint pain without redness or swelling; persistent
muscle pain; headaches of a new type or severity; tender lymph nodes
and sore throat.
The frequency of occurrence of these common symptoms varies among
patients: Irritable bowel, abdominal pain, nausea, diarrhea or
bloating; chills and night sweats; brain fog or trouble concentrating;
chest pain; shortness of breath; chronic cough; blurred vision,
sensitivity to light, eye pain or dry eyes; allergies or sensitivities
to foods, alcohol, odors, chemicals, medications or noise; difficulty
maintaining upright position , irregular heartbeat, dizziness, balance
problems or fainting; psychological problems such as depression,
irritability, mood swings, anxiety or panic attacks; jaw pain and
weight loss or gain.
Source: Centers for Disease Control and Prevention

Scientist's empathy for patients comes from family's own experience with cancer
By Lenita Powers lpowers@rgj.com

It was the death of her grandfather when she was a child that set Judy
Mikovits on a path to help others stricken with illness, especially
those who deal with the ridicule associated with Chronic Fatigue

"When I was about 12 years old, my grandfather got lung cancer," said
Mikovits, the lead researcher at Reno's Whittemore-Peterson Institute
for Neuro-immune Disease.

Her parents had divorced, and Mikovits moved with her twin sister and
mother into her grandfather and grandmother's home in Washington,
D.C., during the 1968 riots when the streets were literally on fire.

"My grandfather was a quiet, gentle guy," Mikovits recalled. "He kept
telling us everything was going to be OK, but we wondered what we
would do without him."

In those days, people didn't even say the world "cancer," and some
people still harbored the false belief that it was infectious, she

"My grandfather was dying of cancer, and nobody would talk about it,"
Mikovits said. "One day I said to him, 'Don't you know you're dying?'
And he said, 'Don't say that. I don't want your grandmother or your
dog, George, to know."

"He was dying of cancer, and nobody would talk about it. That's what
bothered me most."

It's what instilled the 52-year-old microbiologist with the empathy
she has today for patients with Chronic Fatigue Syndrome.
"All these CFS patients are stigmatized; that's why they stay in the
closet. I think we're where we were 40 years ago with cancer,"
Mikovits said. "It carried a stigma like CFS does."

Some medical professionals believe the symptoms of Chronic Fatigue
Syndrome patients are the physical manifestations of emotional or
psychological problems.

But the research conducted by Mikovits and her team of reachers at the
Whittemore-Peterson Institute could provide the first means to
actually diagnose the illness with the discovery of a new infectious
human retrovirus, XMRV.
"You talk to CFS patients and they say, 'Thank God I have a deadly
retrovirus. Thank you,' because now that makes their illness real.
They aren't just crazy," Mikovits said.

Mikovits (pronounced Mike-oh-vits) returned last week from an annual
conference of the Society for Leukocyte Biology, the International
Cytokine Society and the International Society for Interferon and
Cytokine Research held in Lisbon, Portugal, where she was invited to
discuss her team's latest research.

"They applauded before I gave my presentation," she said. "It was such
a surprise, because they never applaud before a presentation."


Judy Mikovits
Hometown: Flint, Mich.
Education: Bachelor's degree in biochemistry from the University of
Virginia; Ph.D. in biochemistry and molecular biology from George
Washington University.
Career: Worked from 1980 to 2002 at the National Cancer Institute in
Frederick, Md., where she directed the Lab of Antiviral Drug
Mechanisms. She also served as a senior scientist and group leader at
Biosource International, headquartered in Camarillo, Calif., and was
chief scientific officer and vice president of drug discovery at
Epigenx Biosciences in Santa Barbara, Calif. Mikovits has co-authored
more than 40 peer-reviewed publications that address fundamental
issues of viral pathogenesis, hematopoiesis and cytokine biology. She
joined the Whittemore-Peterson Institute as its lead researcher in

No comments: