Tuesday, August 17, 2010

The Rainmakers

While attending the IACFS conference in Reno in March 2009, the Patient Advocate drove past the construction site of the Whittemore-Peterson Institute and took some pictures. (The PA imagines that he was not the only one to do this.)

There was not much to see at that time – a dirt patch and several poured concrete walls. The Patient Advocate cannot remember ever being as excited about viewing a construction zone. The PA stood awhile and watched steam shovels digging and trucks moving around piles of dirt. The PA was thinking ahead to what was going to happen on this scrap of desert at the northern most part of the University of Nevada, Reno. The PA had visions of eventually bringing his daughter to this Institute for treatment. He still has that vision.

Amazingly the Whittemore Peterson Institute for Neuroimmune Disease opened this month – to the public on Saturday August 21st. and to a VIP audience on August 16th. The latter celebration featured a keynote address by Senator Harry Reid and speeches by various public and University officials. Senator Reid is the strongest supporter of ME/CFS research in the US government, and the ME/CFS community owes a great deal to him (politics aside). Because of Senator Reid there are others who are beginning to take some interest. The local Reno representatives have been equally active in bringing this situation to reality. The consequences of Reid potentially being voted out of office is going to impact extremely negatively for the advancement of ME/CFS research in Nevada. The Patient Advocate hopes that Nevada residents suffering from Neuro-immune illness keep this in mind as they pull the lever. This is less a political statement than a statement of reality.

The establishment of the Whittemore Peterson Institute has been an immense public/private collaborative effort that is going to redound to the benefit of all involved. To borrow a phrase from another person and another setting: “This is it. This is what we have been waiting for!”

After the ceremony on Monday August 16th, there was a reception in the new building. Tours were given of the facilities and an eight minute video celebrating the opening was shown in the auditorium. This video will shortly be available for viewing on the Whittemore Peterson Institute website. The auditorium seats about 100 persons and lends itself towards presentations and discussions.

For starters, the reader can look on the WPI's website at a time-lapse video of the construction of the building from beginning to end. High off one end of the construction site stands a fixed camera that takes a picture every 7 minutes of the days, months and years of construction. Playing this video (please play the full screen version) you can literally see the building unfolding in front of your eyes.

The Whittemore Peterson Institute is a beautiful building indeed, rendered in this manner by a fine architectural firm, Dekker/Perich/Sabatini. This firm was charged with making a hospitable home for the Neuro-Immune research and treatment center. They did a fine job. People intimately involved with this illness were involved in the design at every step of the way. These people do not just sign off on someone else's idea of what needs to be done. They do it themselves.

The WPI shares this new building with the University of Nevada’s Center of Molecular Medicine. With this large building the University of Nevada, Reno is putting itself firmly on the map of molecular research. Within this larger building, the Whittemore Peterson Institute encompasses 19,000 square feet of medical space, including over 4,000 square feet of basic and clinical laboratories dedicated to innovative research. It will be a place where ME/CFS patients can be diagnosed and participate in clinical trials, where novel research will be conducted, and where medical students can learn about this disease.

The inside of the Institute building is tailored to the needs of the WPI physicians and researchers. No longer do the researchers have to work in a makeshift lab on top of existing University chemists and biologists. For the first time the WPI has its own dedicated research space – and it is a state of the art research lab - the first in the world dedicated exclusively to research into Neuro-Immune illness. Additionally the WPI research labs are in close proximity to University faculty in the Center for Molecular Medicine, thereby facilitating informal exchange and interaction.

Across the way on the same floor is the new home of the VIPdx labs. For the first time, the clinical lab will be housed in close proximity to both the research lab and to the diagnosticians. This new space, again state of the art, will allow for closer coordination of the two labs, as well as faster and more immediate diagnostics for the attending physician or physicians.

The third major element of Neuro-immune Institute is the patient treatment facility. This large area includes offices, waiting rooms and treatment facilities. This is the domain of the new Medical director of the WPI and his (or her) staff. Here he or she will oversee other physicians in the treatment of patients. It is in this area that testing and treatments will be developed that will be of help to many thousands of patients.

True to form, every aspect of the treatment center is designed with the patient in mind – and for the particular needs of this patient population – in ways that have never existed anywhere before. For instance there are multiple isolated, soundproof, rooms (or cubicles), where patients can be treated horizontally and free from stress. These rooms are designed to sustain and protect the fragile, chemically sensitive patient during treatment or examination. In this way patients will be more readily tolerate the treatment visits.

The Patient Advocate is particularly sensitive to access to medical facilities. The WPI building has a readily accessible main entrance where a car or van can pull right up to the front doors. These doors open automatically and the distance to the elevators is less than 50 feet. There are two elevators that respond promptly and allow the patient to arrive at the doctor's office and treatment rooms in a matter of seconds. This has obviously been carefully planned out for the greatest ease and convenience for the patient.

While patients can travel for treatment to the WPI, it is important to note that this will not be necessary. The WPI imagines developing worldwide interactions with like-minded research and treatment centers. This Institute aspires to develop treatment protocols that can be exported to other physicians. In this way, it will not be necessary to come to Reno to get treatment.

The WPI is the first Neuro-Immune research and treatment entity in the world but they have also done this in the “right way” – with the patients in mind. Now it is a reality, for all to see.

On Tuesday the 17th, the WPI hosted an all day invitation-only conference on research (XMRV research) in ME/CFS. So right at the beginning – Wham, Bang! - the WPI makes things happen. This is the calling card of the WPI - sharing information, translational research and medicine, opportunities for exchange of ideas - all with the goal of pushing along research at a increased pace and to bring treatments that will bring relief to these neuro-immune patients. The Patient Advocate can assure the reader that this conference exceeded expectations and generated exchanges that advanced the basic ideas of the WPI. In other words, the intellectual aspirations of this conference matched the beautiful reality of this new building. Several very well-known participants commented that this was the best scientific conference that they had ever attended. These events, along with what will unfold in the next few days, weeks and months are the realization of the efforts of a dedicated few to get to the very center of this illness. We need to thank them and give them help.

In an effort to help his daughter the Patient Advocate has been to many places and seen many people. This event in Reno was astonishing.

"Reno - it's not just for gambling anymore."

Check out this WPI video by Peter Cairns.


  1. "Where patients can be treated horizontally." Wow. It's amazing to me that nobody else does this. But then, hardly anybody else bothers with ME at all.

    I wonder if they're able to accommodate the chemically sensitive.

  2. Thank you, Patient Advocate, for this description of the new WPI building, and especially for the interior pictures. I think this is a giant step forward for all of us who suffer from ME/CFS.

    Patricia Carter

  3. I have tears in my eyes. I too dream of coming here for treatment one day.

  4. So inspiring. Makes me proud to be an American citizen, and makes me hopeful that answers are around the corner. Thank you, PA.


  5. Thank you PA for helping to keep the information flowing. Your daughter is a very lucky woman.

    WPI has given hope to millions...just see how our world has changed since last October, despite all the trolls naysayers.

    Thanks, to you and to the WPI team.

  6. Wonderful news!

    Meanwhile, here in the UK a leading children's CFS doctor (& advocate that they be treated solely by psychological interventions including graded exercise) has publicly stated that the WPI building does not exist:

    "...That’s a fake picture – it’s what they would like to exist..."


  7. From the U.K. this looks like everything any person with this disease could dream for - I had to pinch myself to make sure its true. Thank you so much everyone who has had even the smallest job in making the WP Institute happen. The most heartfelt Congratulations.

  8. I'd like to agree with my wife's comments as above (both having suffered this dreadful illness for 40 years) and am only sad that I cannot pass these on personally to the many people involved in this tremendous feat of acomplishment.

  9. The article below mentions that a Wall Street Journal reporter attended the grand opening on Monday but doesn't mention a name. Does anyone know if it was Amy Dockser Marcus?


  10. Thank you for this wonderful description and photos!

  11. Joy! I have CFS, thirteen years in bed (with brief trips out for food and meds). I do wish you all the best of success. Having a real door to open is a fine beginning. Take care, not all of our enemies are diseases... just the worst ones. People are wimps, relatively, even really stupid ones, like me, these days. Alan Marcy

  12. This is absolutely wonderful!! I have been sick for 8 years and this is a big answer to my prayers!! Carolyn

  13. Thank you so much for this virtual tour of the WPI!! The facilities look gorgeous -- and welcoming. I hope one day to be well enough to travel again (after 18 years of ME/CFS, with over 12 of them characterized by complete inability to travel and permanent crashes from small exertions), and the WPI will be one of the first stops!

    I am also delighted to hear that developing treatment protocols for doctors and patients who cannot travel is a priority of the WPI.

    I did have a question about this:
    -- For instance there are multiple isolated, soundproof, rooms (or cubicles), where patients can be treated horizontally and free from stress. These rooms are designed to sustain and protect the fragile, chemically sensitive patient during treatment or examination. --

    This is a wonderful accommodation, but when I read the description I wasn't clear on how this reached out to chemically sensitive patients as well as those hypersensitive to stimulation due to ME/CFS. Does the WPI have a chemical or fragrance free policy and do the cubicles provide a particularly chemical-free zone? I know a lot of patients would probably love to know this information.

    Best, Peggy