Whittemore-Peterson Institute news?

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Feb 5, 2009.

  1. mezombie

    mezombie Member

    This is the latest published item I'm aware of from the WPI. Does anyone have any updates? If so, please share!

    The most I've been able to find is this nugget, from Consuegra's post on the recent IACFS/ME Reno conference:

    "Vincent Lombardi, also with the Whittemore-Peterson Institute, concluded that cytokine and chemokine signatures in subgroups of ME/CFS could be used diagnostically, as serum biomarkers to striate patients for appropriate anti-inflammatory, antimicrobial and antiviral therapeutics."



    New UNR center raises hopes for CFS patients

    Reno Gazette-Journal
    By Lenita Powers
    February 5, 2009

    People from across the nation and around the world who suffer from Chronic Fatigue Syndrome and other neuroimmune diseases are waiting anxiously for the opening next year of a new medical research center at the University of Nevada, Reno.

    The $86 million Center for Molecular Medicine will expand the university's research capabilities into cancer and other diseases and house the headquarters of the Whittemore Peterson Institute, which offers hope in the form of clinical trials and treatment for people who suffer from such diseases as Chronic Fatigue Syndrome, fibromyalgia and atypical multiple sclerosis.

    "I get letters from all over the world, Australia, Spain, Ireland, London," said Annette Whittemore, founder and vice president of the Whittemore Peterson Institute. "I got an e-mail saying Canada cheered when they heard the news that the institute was going to be a reality."

    The institute plans to conduct clinical trials, but there is no waiting list yet, said Whittemore, wife of Nevada lobbyist, lawyer and developer Harvey Whittemore.

    The Whittemores -- whose 31-year-old daughter, Andrea, has suffered from CFS since she was 12 -- donated $5 million to help build the Center for Molecular Medicine.

    "We will actually be able to provide patient care that, right now, is very spotty or nonexistent while also bringing expertise into the field," Annette Whittemore said.

    Except for a one-time allocation of $19 million in state funds, the center will be financed with bonds funded by federal grants and contracts attracted by the center's expanded research capabilities and some of the nation's top researchers, said Kenneth Hunter, chairman of UNR's Department of Microbiology and Immunology.

    "With this state-of-the-art facility and equipment, the ability we will have to recruit some of the best and brightest faculty and researchers with this extraordinary new building cannot be described," he said.

    Hunter said the Center for Molecular Medicine received $1.6 million in federal grant money last year for equipment, much of which already is being used in laboratories on campus and that will be moved into the new building when it opens.

    First research project in decades

    The center is the first new medical research facility built at UNR in more than 20 years, and it will bring the university's research capabilities into the 21st century, President Milton Glick said.

    "It's enormously important in the sense that it also is the first building ever built on this campus dedicated only to research, and that will allow us to generate more research dollars," he said.

    The new center, along with other buildings that have recently opened or are under construction on campus, shouldn't draw the taxpayers' ire because they were in the pipeline and partly funded by the state before the economic crisis began, Glick said.

    "The student union, the Knowledge Center, the Davidson Math and Science Center, every one of these buildings was approved three to six years ago by the Legislature at a time when the state was still booming," he said. "And the student union was paid for by the students, who taxed themselves with an extra fee to pay for it."

    The Center for Molecular Medicine will be funded in what is an unusual public-private partnership for the campus, Glick said.

    "This is the first new building being constructed on campus where we will have the private sector occupying space they paid for," he said.

    The Davidson Academy for exceptionally gifted students is a public academy started and partly funded by a private foundation, but it is located in the old Jot Travis Student Union, not part of a new construction project, Glick said.

    Clinical trials draw funding

    Hunter said the Whittemore Peterson Institute, which will be headquartered in the new center, will help the university's medical students, as well as patients.

    "Think about having an institute that is one-of-a-kind in the world that is dealing with a highly prevalent condition, but there is really no specific place you can go to get this kind of treatment," Hunter said.

    "Our students will be exposed to cutting-edge diagnosis and treatment for neuroimmune diseases," he said. "I envision our medical students standing in the clinics next to guys like Dr. Dan Peterson, who is one of the world's authorities on Chronic Fatigue Syndrome. This will give him an opportunity to run a first-class facility and train our students as well."

    Judy Mikovits, director of research at the Whittemore Peterson Institute, is doing work based on blood samples taken by Peterson during a 1984 outbreak at Incline Village among about 100 people who exhibited symptoms of Chronic Fatigue Syndrome.

    Hunter said the problem is that doctors have no test they can run to determine if someone has CFS, but research being done by Mikovits and other scientists that could one day lead to a blood test or other means of diagnosing the disease.

    Mikovits, Peterson and other researchers with the institute will be making their presentations at the International Association for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis conference scheduled on March 12-15 in Reno.

    Hunter said only recently has enough scientific evidence has emerged to convince physicians and researchers that CFS is a disease and not just a catch phrase for a bunch of symptoms.

    "You can imagine how frustrating that is for patients who clearly are suffering," Hunter said. "They go to a physician who, because this disease hasn't received acceptance in the medical community that others have, treats them for years for ancillary things other than CFS.

    "So if this disease can be validated with research and strong clinical information, it's going to absolutely affect the lives of so many people in a positive way," he said.

    Counseling, therapy offered

    Whittemore said the institute will offer patients nutritional advice, supplements and physical therapy.

    "We'll do neuroimaging with other partners to look at the brain and try to deliver at one institute as much comprehensive treatment as we can," she said. "We'll have counseling, and we would like to have a psychologist on board because living with a chronic disease is tremendously difficult."

    The Whittemore Peterson Institute is a major component of the Center for Molecular Medicine, but Hunter said the center's mission extends beyond research solely into CFS.

    "From the university's perspective, it will be far broader than that," he said. "The three departments that predominantly will be working there will have a huge number of federally funded research projects, ranging from cancer to inflammatory diseases and infectious diseases. It's very synergistic because I think we will benefit just as much in our medical school department by collaborating with the institute."

    [This Message was Edited on 03/18/2009]
  2. SpecialK82

    SpecialK82 New Member

    Thanks for posting!
  3. mezombie

    mezombie Member

    I'm very hopeful about this as well. We sorely need a center like this!
  4. emmally

    emmally New Member

    when they are suppose to announce the virus that they have discovered that is suppose to be the cause of CFS that they announce last year in that video...If they have announced that they have discovered it, than why are they not telling us what it is? Seems a bit strange to me or maybe I am wrong and just confused.....You cant say you have found the cause of cancer, and than not tell what it is...right???
  5. outofstep

    outofstep Member

    RIGHT! This was supposed to be presented at the conference but I haven't been able to find any info on it whatsoever. I expected this to be made public via the conference so don't know what they're waiting for-unless they are publishing it somewhere first. If anyone knows what's going on can you please post?
  6. emmally

    emmally New Member

  7. mezombie

    mezombie Member

    I share your frustration.

    I've edited my first post on this thread. Perhaps someone will help us out.

    The most I've been able to find is this nugget, from Consuegra's post on the IACFS/ME Reno conference:

    "Vincent Lombardi, also with the Whittemore-Peterson Institute, concluded that cytokine and chemokine signatures in subgroups of ME/CFS could be used diagnostically, as serum biomarkers to striate patients for appropriate anti-inflammatory, antimicrobial and antiviral therapeutics."

    Don't know what to say! I wasn't there.

  8. outofstep

    outofstep Member

    It'll come out sooner or later-but probably most of us want to it to be sooner.
  9. skeptik2

    skeptik2 Member

    Hello, rafiki,

    I am astounded that the WPI was not only not represented at the Reno conference, but that there was NO prominent announcement made about them, as far as I can see from the postings here.

    I have been lurking around, watching the unfolding of the WPI saga, and have wondered if the national CFIDS group has had anything to do with that. I read here that they are looking for international collusion (collaboration?) on research studies.

    A Dr. Klimas was at Reno, wasn't she? She is now director of the national group, isn't she (if I even remember correctly from what I read). Could she feel pressure to "compete" with the WPI.

    I may be very wrong in interpreting or understanding what I have read in the postings here, so please feel free to correct any of my errors/assumptions.

    Thank you for your always informative postings.

  10. sunscaper

    sunscaper New Member

    Does anyone know what part of 2010 that it is supposed to be open? I want an appointment, NOW.
  11. mleeril

    mleeril New Member

    I was at the Reno Conference for the "patient day." After the conference they held a reception where Andrea (?) Whittemore spoke and thanked everyone for attending. She said the WPI was supposed to be open in late 2010, that it was being built on time and on budget.
    I also spoke to the architect of the building who wasn't quite as firm, thinking it could be done in 2010, or January 2011.

    There is no competition between Dr. Klimas and Dr. Peterson, or anyone else associated with the WPI. They all want to see this center get built. Dr. Peterson, who is located in Incline Village, is the medical force behind the institute, but the Whittemore family has been heroic in pushing to get it built. They are traveling to Washington D.C. this month, or next, to talk to Harry Reid, the majority leader of the Senate, and a Nevada Senator, about getting addtional federal funding for the WPI. They seem optimistic that he will help.
    Hope that helps.
    Mike R.
  12. skeptik2

    skeptik2 Member

    Thank you! I'm so glad to hear they are all behind the WPI...

    Harry Reid has been our strongest advocate in Congress for many years. I hope he has the time to devote to our cause, with all the economic woes going on.

    A friend says her son was let go after 25 years with one of the largest banks. He is traveling he country, sending messages to mother telling of strip malls being turned into shelter for the homeless as they slowly go out of business.

    Let's hope the WPI doesn't get hit by this economic crisis and gets answers for patient real soon

  13. SpecialK82

    SpecialK82 New Member

    mleeril -

    Thank you for posting - I'm excited that they will be talking with Harry Reid - I am praying that they can convince him. Maybe we can get another stimulus bill written just for us, LOL

  14. mezombie

    mezombie Member

    Hi there,

    I'm afraid I haven't been up to posting due to migraine and other health problems

    Thanks, Mike R., for clearing up some of the confusion. It's true that Klimas is seeking funding for her own center in Miami. Let's hope there's room for more than one; we sure need as many as we can get!

    As to the "breakthrough" research many of us were hoping for, like Emmally, I wonder if a paper has been submitted to medical journals for peer-review. Or perhaps there is a patent application involved. There's also the possibility that the researchers are not as far along as they hoped to be by now. In all of these cases, the WPI folks who were at the conference are prohibited from going into much detail about their research.

    I guess we'll have to continue the waiting game...

    Hanging in there with you,

    P.S. Thanks, Skeptic2 :)
    [This Message was Edited on 03/20/2009]
  15. sunscaper

    sunscaper New Member

    For all your informative threads...I know you don't feel like responding, right now...migraines are tortuous...

    Does anyone else know the difference in approaches to ME or if there are any differences between Dr. Klimas and Dr. Peterson? and the effectiveness of each doctor?


  16. mezombie

    mezombie Member

    Hi Carole,

    S'OK, migraine's gone now!

    I'm pretty sure Dr. Peterson focuses a lot of attention on HHV-6 and treats with antivirals.

    I'm not sure about Dr. Klimas approach to treatment.

    And I don't know how successful they are at treating.

    You might want to post this question as a separate thread, because I'm pretty sure there are people here who are or were patients of these doctors.

    This is a good question!

    Good night,

  17. znewby

    znewby Member

    Am I imagining that someone said that there would be news from Whittemore Peterson soon. I thought that was mentioned in the spring. If they have important information shouldn't they be sharing it. For some reason I expected to hear something come out in June. Perhaps there isn't much to this news or it would be out. Secrets can't be kept that long.
  18. jasminetee

    jasminetee Member

    I agree znewby. I had a lot of hope in WPI and still have some... I'm just not sure what to think now. I don't understand why we haven't heard any news. I wouldn't be upset if they said they were wrong about this virus they thought they found but they don't seem to be saying anything. Maybe they just don't know themselves yet. It sure would be nice to hear an update from them at least.

  19. ladybugmandy

    ladybugmandy Member

    you are right. i do not receive satisfactory replies, either. i am interested in sending them tissue after i am dead but they do not seem interested. i know they have a tissue bank.

    i think the talk about the "new" virus is just HHV6a.

    if they really had something spectacular, wouldn't Annette Whittemore's daughter be cured? I heard that she is better but still sick.

    I know someone in Reno seeing Peterson now and its the same old stuff: Valcyte, Vistide, possibility of Ampligen.

    i recently connected with a wonderful lady who knows some people who were totally cured on ampligen (they did not need the drug anymore), and others who werent. there are some who got cancer after they went off the drug. seems like the exact same scenario with the other antivirals...luck of the draw...
  20. jasminetee

    jasminetee Member

    ladybugmandy, thanks for posting that info. I'm following everything you say as closely as I can because you really stay up on all of this. :)

    I emailed WPI weeks ago and haven't heard back. :(