Report on the WPI community open house, August 21, 2010

Discussion in 'Fibromyalgia Main Forum' started by richvank, Aug 21, 2010.

  1. richvank

    richvank New Member

    Hi, all.

    I would like to relate my impressions of the open house held this morning (August 21, 2010) at the Center for Molecular Medicine of the University of Nevada, Reno, which houses the new Whittemore Peterson Institute for Neuro-Immune Disease.

    It was a very pleasant day, weatherwise, in Reno today. I arrived in the parking lot by the new Center shortly before 10 a.m. The Center is part of the School of Medicine, which occupies a complex of buildings on the UNR campus. There is a large building currently under construction on the other side of the parking lot from the Center. I understand that it will house the training of doctors.

    The Center is an attractive four-story building with 140,000 square feet of space. There are 11 handicap parking spaces, as well as a drop-off zone in front of the entrance.

    I walked through the large glass doors into the spacious lobby, and there were already several other people at a reception desk, where some pleasant women were greeting visitors and handing out brochures and announcing that there would be guided tours beginning a little later. Some students from the University would be helping to lead the tours. Off to the left was a stand offering complimentary lemonade, iced tea and bottled water, and off to the right was a long table loaded with delicious cookies, neither of which I resisted!

    People continued to gather. I didn’t try to make an accurate count, but I would guess that probably between 100 and 200 people showed up eventually. I had noticed that the event was announced on Reno TV in my temporary digs at Motel 6 earlier this morning.

    After a little while, Annette Whittemore stepped up to a microphone and got everyone’s attention. She welcomed the group, introduced several people, and thanked those who had been involved in the establishment of the Whittemore Peterson Institute. Those introduced were her daughter, Andrea Whittemore Goad, her husband Harvey Whittemore, Mike Hillerby, Judy Mikovits, and Vince Lombardi.

    Andrea Whittemore spoke briefly, and then Annette introduced the President of the University of Nevada, who commented on the Center and how it fit into the overall School of Medicine and the University, and how happy he was that all of this had come together, as a result of a lot of cooperation and coordination.

    Judy Mikovits spoke very briefly and pointed out that a video would be shown repeatedly in the auditorium, and that she would be available to answer questions and would stay until everyone’s questions were answered.

    Then the tours of the building began. People could join guided tours, or they could just go on self-guided tours. I decided to wander around by myself. There are two large multifloor wings: the medical office wing and the research wing. The medical office wing houses offices, of course, but also an auditorium that seats 97 people, an “eatery,” the Center for Healthy Aging, a suite dedicated to intravenous infusions, a brain imaging facility, a nursing station, several individual examination rooms, and a conference room.

    The research wing has lots of laboratory space, offices, and a vivarium (place where laboratory mice are kept). The Center will include research on a variety of topics in addition to the work to be done by the WPI, and during today’s tours, the various researchers from the basic science research departments of the School of Medicine displayed posters describing their ongoing research projects, which included work on asthma, breast cancer, cardiac electrophysiology, emerging infectious diseases, gastroparesis, herpesviruses, male infertility, muscular dystrophy, neural control, preterm birth, vascular smooth muscle cells, and stroke and neurodegenerative diseases.

    I got into interesting discussions with some of the researchers, and the time went by all too fast! I unfortunately did not make it to the auditorium to see the video, but Belcanto did see it and told me it was quite good. I also noticed some very nice artwork on display in the halls, and in one of the waiting rooms there is a beautiful quilt that was made by Chris Krause, from the Wisconsin CFS support group.

    I was told that the VIP Dx lab will be on the fourth floor of the building.

    I was able to talk to a few people, some of whom I had met before, and others who were new to me. Those I spoke with who are associated with WPI included Annette Whittemore, Andrea Whittemore, Judy Mikovits, and Vince Lombardi.
    I also met Harvey Whittemore. I talked with Eric Johnson (of mold illness fame!) and Bruce and Pat Fero, all of whom I had met before at CFS conferences and online, and for the first time I met Kent Heckenlively (who writes an autism blog) and Belcanto and her husband.

    It was very enjoyable to talk to all these people. Andrea told me that she is doing much better, and Annette seconded that. I told Andrea that a lot of people would like to know the details of her treatment, but she said she is keeping her treatment private for now, but may reveal it some day. She also said that they had established a scientific working group, and that the next step would be to choose a medical director. The medical director would then assemble a medical staff. One of the first of them would be a radiologist for the brain scanning facility. She said they may eventually be able to have up to 50 employees at WPI.

    Judy volunteered to me that she continues to be interested in methylation, and that she has some joint projects going on in this area with Jill James, who is the autism researcher at the University of Arkansas medical school whose work prompted me to suggest treatment for the methylation cycle in CFS.

    I talked to Vince Lombardi for quite a while, and also listened to his discussions with others on the tours. Vince has an interesting background. His thesis work was in protein biochemistry, and he did his research on neuropeptides extracted from caterpillars. He worked on RNase-L at Temple University, and on prostate cancer with Robert Silverman, and then with Judy on XMRV. He is currently focusing on studying how XMRV affects the immune system. He thinks that perhaps XMRV causes immune system dysfunction in CFS, which allows reactivation of other, latent viruses that are in the body. He has a paper coming out soon that deals with inflammation in CFS, as indicated by upregulated cytokines and chemokines. He said that the stages of CFS can be distinguished by the pattern of these markers.

    Vince also said that new tests for XMRV will be announced by VIP Dx lab next week, and that we should watch the website, starting on Monday.

    Vince had not heard about the proposed name change for XMRV, and said that it can certainly be proposed, but may or may not be adopted.

    He said that he could not say much yet about XMRV in autism, except that it had been found that the prevalence of XMRV positive tests has been found to be higher in autism patients than in the general population.

    He said that the mouse retrovirus from which XMRV appears to have mutated affects only wild mice, not laboratory mice. He said that estimates based on the usual rate of mutations as applied to the differences between the genomes of these two retroviruses indicates that XMRV developed a long time ago, perhaps on the order of 100,000 years.

    He said that they don’t know what the reservoir in the body is for XMRV. It may not be the lymphocytes. Perhaps it is the bone marrow.

    It was fun to touch base with Erik Johnson again. He is finally having considerable success in getting people to take the mold illness issue seriously, after many years of facing rejection. We told him that he has been like a prophet, “a voice crying in the wilderness.”

    Everyone is anticipating the publication of the NIH-FDA study, which is supposed to happen next week and is expected to confirm the WPI finding of XMRV in CFS. This is expected to be a major boost for the WPI, and hopefully will help them in getting grant support for their work, which will be very important for the future of the Institute.

    Judy will be speaking at the NIH conference on XMRV to be held in early September on their work involving XMRV in people from the UK.

    They have also analyzed blood samples several other cohorts, including patients with atypical multiple sclerosis, autism, fibromyalgia, and Lyme disease. The results of these studies will be published in the future.

    Eventually, the staff had to gently herd us out, since quite a few of us continued to remain in the lobby talking after the scheduled open house was over, even after the cookies and the lemonade were gone!

    I think everyone had a good time at this event, and I’m really happy that I came. There was a lot of hugging that went on between people there, as well as some tears of joy. I expressed to Annette, Andrea and Judy that there are a lot of people who were not able to come, but who are very grateful for what they are doing, and of course they were already aware of that. I didn’t manage to talk with everyone I would have liked to in the two hours that were allotted to the open house, nor did I make it to see the video in the auditorium, as I mentioned earlier. As Belcanto has noted, this video had been made by the son of the much appreciated “Patient Advocate” blogger. His son was also on hand videoing the open house. For those who like (or are willing to tolerate) clichés, it’s a small world, and the plot thickens!

    Belcanto had brought a long list of written questions from various people on the internet, and didn’t have an opportunity to ask all of them, but Judy agreed to answer all of them in writing. She said that she does that when she is riding in airplanes. To Belcanto’s inquiry, Judy assured us that she is doing fine, and she still seems to have boundless energy. She said, and it was confirmed by others there, that there is a joke in their group that no one dares to give Judy a can of Red Bull, for fear of what might happen!

    After the open house, Belcanto and her husband graciously hosted me for lunch at a very nice place by the river in old downtown Reno, and we talked till about 3 p.m. All in all, it was a fun day, and a day that I believe holds a great deal of promise for the people who have M.E./CFS worldwide, as well as to people who have several other of the so-called neuroimmune diseases.

    Best regards,


  2. skeptik2

    skeptik2 Member

    What a nice experience, "seeing" this through your discerning eyes! I am
    sure all of us wish we could have been there, but it's a long way to go for
    only two hours, isn't it?

    Are you invited/eligible to attend the XMRV conference in Sept? I sure
    hope so.

    Glad to hear the proposed name change is not a given; to some patients,
    it portends another "bait and switch" scheme, another name to mislead
    the public about the serious nature of M.E. aka CFS.

    Yes, Eric (and Khaly) have given us much insight as to the nature of
    mold sickness and its devastating effects, for which I, for one, am

    Thanks glad you were there in Reno!

  3. AuntTammie

    AuntTammie New Member

    I so would have loved to have been able to be there, but since that was beyond impossible, it is really great to hear about it from your report......sounds like it went really well - I am so glad!
  4. TigerLilea

    TigerLilea Active Member

    Hi Rich - Thanks for taking the time to report on the open house at WPI. It will be interesting to see if low glutathione will tie in with XMRV.
  5. sascha

    sascha Member

    and, >thank you

  6. ulala

    ulala New Member

    I find it a litle disturbing that Andrea is keeping her treatment, that has her feeling better, "private". Everyone else seems to be sharing what maeks them feel better.
  7. richvank

    richvank New Member

    Hi, ulala.

    You're welcome.

    I understand how you feel about this. I believe that Andrea is a compassionate person and does want to help others who are suffering as she has, so I have to believe that she has a good reason for not revealing her treatment at this point, but I don't know what it is.

    Best regards,

  8. mbofov

    mbofov Active Member

    Thank you, as always, for all you do for us! It is so helpful to have all this information, thank you for being our eyes and ears.

  9. LindaJones

    LindaJones New Member

    thanks for posting

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