(BREAKING NEWS - The NIH has announced a briefing by experts from the FDA and NIH today at 3:00 p.m. EST on their study confirming the Whittemore-Peterson Institute's findings regarding the XMRV virus and chronic fatigue syndrome. The study will be published later today in the on-line version of the Proceedings of the National Academy of Sciences. The Editors would like to congratulate the WPI on this wonderful accomplishment.)
There's a moment in the film Schindler's List in which the accountant, Itzhak Stern shows Oskar Schindler the list of Jews they're saving. The document seems to glow with an almost spiritual light as he says, "This list is an absolute good. The list is life. All around its margins lies the gulf."
Such moments of unsullied heroism are rare, but I traveled two hundred and fifty miles to Reno, Nevada this last weekend to observe one. I'm talking of course about the opening of the Whittemore-Peterson Institute for Neuro-Immune Diseases which is part of the new Center for Molecular Medicine at the University of Nevada, School of Medicine.
All of this transpired because of Harvey and Annette Whittemore and their unrelenting efforts to help their daughter Andrea who suffers from chronic fatigue syndrome (myalgic encephalomyelitis). Along the way they were helped by many physicians like Dr. Daniel Peterson who struggled to understand the epidemic, and lately by Drs. Judy Mikovits and Vincent Lombardi. Like autism, chronic fatigue syndrome has been the subject of scorn and ridicule in the medical community. Even when pioneering scientists showed significant immunological abnormalities among chronic fatigue syndrome sufferers it was difficult to get the medical community to pay attention.
When I say that the vision of the Whittemores for an institute in which the very best of medical science would be harnessed to solve this mystery has been realized, what do I really mean? Here are some facts about this effort. The newly completed Center for Molecular Medicine was built at a cost of $77 million dollars, encompasses more than 115,000 square feet of office space, labs, and patient care areas, and will eventually house approximately 150 researchers and 30 principal investigators.
The Whittemore-Peterson Institute for Neuro-Immune Disorders (WPI) has been in the news most recently for its discovery linking the XMRV virus (xenotropic murine leukemia virus related virus) to chronic fatigue syndrome. The discovery was published in October of 2009 in the journal Science and can be found HERE. There are rumors that this study will shortly be confirmed by new a study coming from the NIH and FDA.
I've become aware of the chronic fatigue community over the past several months because of their similarities to the autism community. Like us, they have been attacked by the medical community, and perhaps even more cruelly, since the medical community has often engaged in an active campaign to label them as psychologically unsound. And yet, despite the ravages of this disease and the campaign waged against them the chronic fatigue community has persevered.
And so on a Saturday morning I stood in a large open lobby with tall glass windows and abundant sunlight, surrounded by somewhere around 200 people, many in wheelchairs, and some with oxygen tanks, to celebrate the opening of this wonderful new center. The day belonged to those with chronic fatigue syndrome, many of whom have been sick for decades. However, I would be remiss if I didn't note that the WPI's own promotional materials also listed Gulf War Illness, cancers, and autism as neuro-immune disorders which they plan to study. Whether the XMRV virus is a part of these disorders and possibly more is an open question at this point, but let's just say a lot of blood from my family is making its way to Nevada to try and answer these questions.
I've come to know some of the people at the WPI over the past several months and I'd like to make some personal observations. Dr. Judy Mikovits is the type of medical researcher I've long wanted to believe exists at the very top levels of science. She is brilliant, a straight-shooter, and goes where the evidence leads. She also understands the politics of science and who needs to be standing at her side if she's going to make a fight, even if some of the games played by other scientists and institutions disgust her. Dr. Vincent Lombardi is a careful, thoughtful researcher with a remarkable future in front of him.
I was also able to meet Harvey and Annette Whittemore. Their dedication to finding an answer to the problems of their daughter would be immediately familiar to any of the warrior parents of children with autism. Like us, they believe that passion and a personal stake in questions about a disease are not a disqualification for good science. In fact, such an interest is more akin to a guarantee in the quality of the research as they are most personally impacted by both the successes and the failures.
The facility was open for tours and I was able to view treatment rooms designed especially for the needs of those with chronic fatigue syndrome as well as the labs in which the research will be conducted. I spent part of last summer taking classes at Lawrence-Livermore Labs and must note that the WPI rivals anything at one of our leading national laboratories. Many of the researchers were available to discuss the implications of their work. I had a good understanding of many of their research areas and it was a joy to be able to question them more closely about their findings.
In trying to understand the import of this day I asked many of the staff if there was any comparable research facility in the world dedicated to neuro-immune disorders. They told me the WPI was a truly unique place, unprecedented not just in size and scope, but in the collaborative atmosphere in which research findings will be translated as quickly as possible into clinical treatments.
The great physician, Sir William Osler wrote, "Medicine arose out of the primal sympathy of man with man; out of the desire to help those in sorrow, need, and sickness." It is good to to know that Olser's ideals live on at the Whittemore-Peterson Institute. I believe that all those who suffer from neuro-immune disorders will soon benefit from their efforts.
Kent Heckenlively is a Contributing Editor to Age of Autism