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What is Chronic Fatigue Syndrome?
It is an illness that is estimated to affect more than 1 million people in the United States and 17 million worldwide.

What are the symptoms?
Extreme exhaustion that lasts more than six months; impaired memory or inability to concentrate; joint pain; persistent muscle pain; headaches, and tender lymph nodes and a sore throat. Women are three times more likely to be affected with CFS than men.

How is it diagnosed?
There is no test to diagnose the illness. It usually is diagnosed by eliminating possible other causes of the symptoms. That is one of the reasons it has remained a medical mystery and the cause of sometimes bitter debate in medical circles over whether it is a physical illness or a collection of symptoms that have different causes in different patients. S

How is it treated?
Since there is no known cause of the illness, there are no drugs to treat it, only medications for the various symptoms.

What did the Whittemore-Peterson Institute researchers discover?
They found a new infectious human retrovirus, XMRV (a xenotropic murine leukemia virus-related virus), in the blood of 67 percent of the Chronic Fatigue Syndrome patients they tested. There are only two other known human infectious retroviruses. The last one, discovered in 1982, was HIV. The Institutes discovery means it is possible, but does not prove, that XMRV is the underlying cause of CFS. Additional studies are needed.

Does that mean you can catch CFS?
XMRV is thought to be transmitted through bodily fluids such as blood, semen and breast milk, but not through the air. CFS likely occurs in people who are susceptible to multiple common viral infections.

What is a retrovirus?
A retrovirus has an RNA genome that must first be reverse transcribed into DNA before inserting its genetic material into the DNA of its hosts cells. Retroviruses have been implicated in the development of some cancers. Recently, XMRV protein was detected in samples from the most aggressive prostate tumors. But until the WPI study, the retrovirus was never shown to be an infectious and transmissible pathogen.

What does the Whittemore-Peterson teams discovery mean?
The presence of a retrovirus in CFS patients establishes CFS is an infectious disease with a biomarker, allowing researchers to test the hypothesis. More research could determine if XMRV is the cause of CFS, which could lead to the development of drugs to treat the disease and possibly a vaccine to prevent it.

Are there other illnesses this discovery can benefit?
A few fibromyalgia samples and about 30 people with autism tested by WPI researchers were positive for XMRV, but testing on a much larger scale is needed to draw any conclusions. However, the link between the XMRV retrovirus and Chronic Fatigue Syndrome could hold out hope for victims of other neuro-immune diseases
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Daughters 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 Annettes desire to honor Dr. Peterson for his lifes 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 dont need any more signs as to how sick you really are. And from that moment, it became part of our lifes work, and I didnt 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 universitys 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 UNRs Sanford Center for Aging.
Harvey Whittemore said his family has spent millions on the institute, but he said he doesnt 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 dont 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, its amazing.
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The Institute
Established: 2005
the name: Named for the Whittemore family and Dr. Daniel Peterson, an Incline Village doctor who is the institutes 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 universitys 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.
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I dont ever want to seem like Im 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 institutes 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 dont 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 Ive 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 possibilities.
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 were 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, theyre 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.
Id be in the classroom listening to the teacher, and Id 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 wasnt 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 neurologist.
They havent been able to get them under control, she said. Its been life-changing. Im not able to go out of the house often, and I have to have seizure medicine with me at all times.
Whittemore-Goads 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 doesnt 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 dont ever want to seem like Im 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. Id 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.
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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 community.
Ive gotten more than 100 e-mails from physicians, and Ive gotten calls from the head of the Mayo Clinic and the clinical director at Sloan-Kettering, she said. Those people wouldnt take the time if they didnt 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.
Weve 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.
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A brothers 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 wont be in pain anymore
I almost always wish for Becca to get better, Ben said recently as he sat on the sofa in his familys 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 didnt 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 Rebeccas parents that their daughter had psychological problems. She suffered from depression and a phobia about going to school, the pediatrician told her parents.
That didnt 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, Rebeccas 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 physicians clinic.
Until we found Dr. Peterson, we didnt know what to do, said George Ghusn, owner of BJG Architects and Engineers. We had a diagnosis but we didnt 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 cant believe theres really anything wrong with her.
And then there are the bad days.
Sometimes Im better and sometimes Im not, Rebecca said. When Im around people, Ill get all hyper and jittery but then I go home and crash. Of course, I get really tired. Sometimes it feels like theres something cold inside of me and Im 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, its 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 Im about 80 years old instead of just 15.
The Galena High School sophomore said her immune system crashed and she hasnt been able to go to school for the last couple of months. Shes 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 isnt 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. Its 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 Institutes study showing the presence of a retrovirus in 67 percent of the CFS patients.
Just because they found this doesnt mean that it will eliminate the problem, he said. Hopefully, it will lead to treatments that will work.
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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
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Scientists empathy for patients comes from familys 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 Syndrome.
When I was about 12 years old, my grandfather got lung cancer, said Mikovits, the lead researcher at Renos Whittemore-Peterson Institute for Neuro-immune Disease.
Her parents had divorced, and Mikovits moved with her twin sister and mother into her grandfather and grandmothers 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 didnt even say the world cancer, and some people still harbored the false belief that it was infectious, she said.
My grandfather was dying of cancer, and nobody would talk about it, Mikovits said. One day I said to him, Dont you know youre dying? And he said, Dont say that. I dont want your grandmother or your dog, George, to know.
He was dying of cancer, and nobody would talk about it. Thats what bothered me most.
Its 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; thats why they stay in the closet. I think were 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 arent 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 teams latest research.
They applauded before I gave my presentation, she said. It was such a surprise, because they never applaud before a presentation.
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Judy Mikovits
Hometown: Flint, Mich.
Education: Bachelors 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 2006.