Letter from America

ON the Edge:

The Whittemore Peterson Institute for Neuroimmune Diseases

August 2007

by Pat Fero
(as sent to IiME)


August 20, 2007

I am sitting on a curb underneath a lovely shade tree located in narrow parking lot behind a medical science complex at the University of NV Reno medical school. My husband Bruce is scouting the perimeter in hopes of finding someone to ask if this is the right construction site for the Whittemore Peterson Institute for Neuroimmune Diseases (WPI).

I look in the distance to see homes on brown hills. To my left is a mountain, but not as high as Mt Rose, which is close to Incline Village and Sierra Medical, the location of Dr. Dan Peterson’s clinic.   In front of me, within two car lengths and as far as I can see is brown red dirt, rocks, and flat gravel roads. Occasionally a white dump truck drops a load of dirt. What are they doing?  Is this the future home of the Nevada Institute of Molecular Medicine?

I sense movement behind me. A familiar looking man comes through the door to the parking lot. Imagine that. I stop him to confirm that I am in the right spot. SO, YES INDEED…. this is the institute and off to my right will be the wing housing is the WPI. The entire building will cost 74 million dollars. (I met Tom Kozel, chair of immunology, in September of 2006 at a WPI fundraiser.) I tell him that all eyes are on RENO. Dr. Kozel comments that it is a massive building project with a projected completion date of 2010. Just a few months ago, this was a 70 foot ravine lined with bramble and rocks.  He moves on to his car.

I dream weave about filling that enormous hole. It feels like my long journey with CFS. I think about the hundreds of thousands of people hoping for a better quality of life through improved medical care that ultimately comes from better research.

Another white dump truck unloads dirt. How much dirt does it take to fill 200 yards, by 100 yards, by 70 foot deep? (Huge and inaccurate guess!)  I am in that truck and have been backfilling for years, trying to create something from nothing.  I think…what if the work they do at the WPI reveals the cause of Myalgic Encephalomyelitis. YES!  They find markers and tests and treatments that can not only help us feel better and save lives, but get us out of this time consuming and hostile war with local medical people, with government groups and among our own. What if?

Leaving my computer bag and water, I walk onto the dirt and over piles of stone way to the right so I can stand on the spot where WPI will stand in 3 years. I take pictures, and then start back. Someone is looking into my bag and I start to wave and shout, but I am too short and too far away for the man to hear me. I start to run in the 92-degree heat. “HEY” Finally the guy sees me and yells back, “ I thought someone forgot their stuff.”

I am huffing away and feeling rather faint. I went farther than I thought and I forgot about the heat and the valuables I left behind. Once I recover a bit and drink ALL the water left, I chuckle and pull out the laptop to write the paragraphs above.  I am crying, too; well sniffling… I want people to know how much hope is riding on the WPI as the number one research facility in the United States for ME and CFS and the other diseases scientists intend to study.

Bruce returns. He talked to a construction guy and it turns out a chain of trucks, left to right, is filling and dumping dirt to close up the earth where the Institute will be built. He goes off to take more pictures.

Pictures are at www.wicfs-me.org (See the Link: Whittemore – Peterson Institute for Neuroimmune Disease)


Part Two

August 29, 2007

I researched the partnerships and collaborations and a bit of history about the Medical School in Reno. Five major buildings form the medical school complex. A major goal of University President Marvin Glick, PhD (Chemistry – UW Madison) is to create a larger presence outside Nevada for the research and training facilities the Reno campus has to offer. Dr. Glick is most interested in academic training for all fields as he is personally committed to top notch education for all students, especially those seeking advanced degrees.

To expand the Reno campus is a huge undertaking. Construction sites and new facilities dot the campus. It appears that Nevada is committed to generating vast sums of money to support programs and increased faculty. In addition, expansion means building partnerships and collaborations outside of the University.

John A. McDonald, M.D., PhD (Duke University, Biochemistry – Rice) is Dean of Medical Sciences. Aside from this, in 2006, Dr. McDonald was appointed to a new Nevada State Commission on Medical Research and Health Care.  Dr. McDonald oversees planning (Small word – Big job) for the Centre for Molecular Medicine (CMM). This is collaboration among the Medical School, the Nevada Cancer Institute, a private non-profit, and the Whittemore Peterson Foundation, also a private non-profit.

As I learn about this, I think about the numbers of people working on the CMM, the money, the meetings, the negotiations and those who work within these entities. I wonder if Dr. McDonald is aware that thousands of people with ME and CFS and FM and other Neuroimmune Diseases are watching and waiting for the completion of the CMM and within it, the Whittemore Peterson Institute?

I feel sure that Dr. McDonald is not aware of the huge interest among patients and scientists and Medical Professionals.  I imagine he is busy all the time and when he goes to a planning meeting, a roundtable of key people work through problems.  People understand the Nevada Cancer Institute because all of us have been hearing about cancers of one kind or another since we were born. We have cancer centres in our communities. However, do people understand Neuroimmune Disease? I don’t.

Here is the plan. Would you please write a letter to Dr. McDonald to thank him for his interest and work on the Whittemore Peterson Institute for Neuroimmune Diseases? Bags of mail, BAGS of mail tell people that what they are doing is significant. E-mail does not count because if you are reading this, you know that you can get 100 E mails a day and when busy, you must discard 75.

If you are an academic, a scientist or a medical professional, especially international, your letter would be like a gold bar in a mailbag. Please think about the possibilities for a new state of the art research, training and clinical centre in 2010.  It’s all good! You know how thankless a job it can be to attend planning meetings to overcome obstacles and work on endless details. Please write a letter to Dr. McDonald and if you are also sick, too, you might mention how important such a centre would have been before you became too ill to work.

If you have ME or CFS or FM, please, please get a handwritten letter out to Dr. McDonald. You can give your former career, how many years sick and just say thanks on behalf of all the patients you know in your community. Ask your family members to write, too. I plan to ask my 82-year-old mother to write a letter. Despite her own failing health, she will do it if I can get the envelopes, address the envelopes and get the stamps ready.

Bag of mail, 2 bags of mail, How about 3?

John McDonald, MD PhD

University of Nevada School of Medicine  

1664 N. Virginia Street (0332)

Reno, Nevada 89557

If you can, please cc the President of the University:

Milton Glick, PhD

President - University of Nevada

1664 N. Virginia Street (001) 

Reno, NV  89557


This is a personal request. I want a lot for us.J)  The plans are made, the building is going up, and

I want the message LOUD and CLEAR. EYES are on RENO.