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Report on the WPI community open house. Aug. 21, 2010

Discussion in 'General ME/CFS News' started by richvank, Aug 22, 2010.

  1. richvank

    richvank Senior Member

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    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 didnt 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 everyones 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 everyones 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 todays 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 dont 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 Im 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 didnt 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) clichs, its a small world, and the plot thickens!

    Belcanto had brought a long list of written questions from various people on the internet, and didnt 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 Belcantos 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,

    Rich
  2. caledonia

    caledonia

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    Wow! Thanks Rich!
  3. cfssufferer

    cfssufferer

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    Thanks for the report Rich. :Retro smile:
  4. camas

    camas Senior Member

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    Thanks so much for this detailed report!
  5. dannybex

    dannybex Senior Member

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    Yes, thank you Rich for the detailed report. So great you were able to be there on opening day!
  6. Sasha

    Sasha Fine, thank you

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    Yes, thanks, Rich! For those of us abroad with no possibility of getting to the WPI, it's great to be able to read your account.
  7. Wayne

    Wayne Senior Member

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    Thanks so much for the report Rich. It seems no matter how much information comes out, it all continues to feel so significant and historic. I'm glad you had a chance to make it to this event, and that it went so well for you and everybody who attended.
  8. 5150

    5150 Senior Member

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    thanks much for this info

    there are many who could not be there on Tues&Sat, but only in spirit. i know that your very detailed account of the opening is a boost for all of us. thank you.
  9. BEG

    BEG Senior Member

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    Nice of you to share your experiences from Opening Day. Thanks, Rich.
  10. Dreambirdie

    Dreambirdie work in progress

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    Great to hear your report, Rich. Thanks a lot for sharing it. Much appreciated!

    Just so amazing that we have such great allies and a research center. WOW!

    I feel awed and thrilled by the whole damn freaking thing! :victory::victory::victory:
  11. maryb

    maryb iherb code TAK122

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    Rich - Thanks so much for taking the time to do such a detailed and interesting report, practically made me feel like I was there:) really appreciated.
  12. jspotila

    jspotila Senior Member

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    Thank you for sharing your experiences, Rich!
  13. IntuneJune

    IntuneJune Senior Member

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    Thank you, Rich, it felt as though you took us by the hand and walked us through the center with you. That was fun. Humphf...also overwhelming. The anticipation is more than palpable.

    June
  14. muffin

    muffin Senior Member

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    USA!
    Thank you for the tour!

    I did watch the Utube videos of Mother and Daughter and was thrilled. I am amazed that they thought this up only in 2006 and then bam! here they are. Sort of BEGS the big question about what the heck the CDC has been doing for 25 years, doesn't it?

    Great job. Thanks for writing it all up. I bet you had a fantastic time!!! Wished I was there but you gave a great account.

    Of note: "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."

    They are going to be so overwhelmed with requests it's really going to hit the staff hard. I and my husband will be tested as soon as possible. I would like for my siblings, niece and nephew, and Mother to also get tested but I know they won't go for it. Or not yet. If I and my husband come back positive then I think that some of them may well get tested to see if they are targets as I keep telling them that they are. Genetics plays into this, re: Dr. Kerr.

    Again, thank you!!!!!!!:Retro smile:
  15. KC22

    KC22 Senior Member

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    Thanks, Rich for the detailed report. It felt as though we were there. Greatly appreciated!!!
  16. Gemini

    Gemini Senior Member

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    Rich,

    Thank you for sharing your experiences at the Open House.

    Very well written, great information!

    Gemini
  17. Trooper

    Trooper Senior Member

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    Thanks from me too Rich : ) A big day for sure!
  18. urbantravels

    urbantravels disjecta membra

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    Thanks so much for the account, richvank.

    This:
    made me wonder how many of the researchers at the closed Tuesday symposium were actually involved in proposing the name changes for both retrovirus and disease that we've all heard about here. If Dr. Lombardi hadn't even heard about it...
  19. sensing progress

    sensing progress Senior Member

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    Lol!!

    Thanks for the report, Rich.
  20. Wasbeer

    Wasbeer

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    Originally Posted by richvank :
    "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!"


    It seems only fair that someone with that much energy finds the solution for curing Chronic Fatigue Syndrome

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