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

[Guest guest]

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 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

Institute. Those introduced were her daughter, Whittemore Goad,

her husband Harvey Whittemore, Mike Hillerby, Judy Mikovits, and Vince Lombardi.

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 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, Whittemore, Judy Mikovits, and Vince Lombardi.

I also met Harvey Whittemore. I talked with (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. told me that she is

doing much better, and Annette seconded that. I told 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 , 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 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 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, 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,

Rich