“We believe that by bringing committed scientists, physicians, and advocates together, we will find the truth about this significant public health threat, sooner rather than later."
- Annette Whittemore
In some ways Annette Whittemore is your typical ME/CFS mother. Like many other mothers, she recalls her concern turning to alarm and then horror as she watched her young daughter collapse with a mysterious illness. Andrea Whittemore was a healthy 11-year-old when a racing heart, severe headaches, nerve pain and exhaustion confined her to bed. At her worst moments Annette Whittemore feared her daughter was dying.
Trips to their primary care physician were no help - and soon the Whittemores, like so many others, were on the ME/CFS treadmill, visiting specialist after specialist. Ten years would pass before Andrea, under the care of Dr. Daniel Peterson, achieved a substantial improvement on the experimental antiviral drug AmpligenR.
Annette knew her daughter was fortunate to have parents with the resources to scour the medical field for help and provide her access to experimental treatments. Not only do many ME/CFS patients have trouble simply getting a diagnosis, but their treatment often consists of nothing more than calls for rest and anti-depressants. When they do find a knowledgeable doctor, special treatments such as Ampligen are often unavailable or simply too costly.
She recalls, "I was constantly being asked if I knew anyone who could help these people." Frustrated by her inability to help, one day Annette had an epiphany, "I couldn't understand why there wasn't more being done. Somehow or other, I got up one day and thought that maybe that somebody was supposed to be me.”
A Revolutionary Partnership
Meanwhile Dr. Peterson was dealing with frustrations of his own. For more than 20 years he'd waited for the federal government to create the kind of integrated research/treatment/education centers that ME/CFS patients so desperately need. Fed up with a federal response he called “abominable,” he was chomping at the bit to get an opportunity to take a more comprehensive approach to this disease.
Over Andrea's bedside, concerned activist mother met frustrated physician/researcher - and a partnership was born that may change the face of ME/CFS research and treatment.
Dreaming big, they envisioned something that had never been done before...an Institute that would:
Provide cutting edge treatments,
Stimulate research into neuro-immune issues,
And provide outreach to a new generation of physicians and researchers.
These were big dreams but they thought they might be able to make good on them. Annette's husband Harvey Whittemore, an attorney and real estate developer, had been active in Nevada's political circles for many years. Harvey signed on to the project, and the three began the long odyssey of gathering the necessary financial and political support.
The Whittemores contributed significant funds and raised more, and in 2005 a bill to create the Institute got the unanimous support of the Nevada legislature. After a tumultuous budget battle in 2007 the funds for the world's first integrated ME/CFS research and treatment center were approved.
Studies Already Underway
Even though the Whittemore Peterson Institute for Neuroimmune Disease (WPI) will not open until 2010, the work has already begun. A year ago a WPI laboratory under the direction of cancer researcher and virologist Dr. Judy Mikovits, PhD, opened on the University of Nevada, Reno campus. This dynamic researcher, whose enthusiasm Annette Whittemore has called “infectious,” is collaborating with a diverse team of immunologists, clinical virologists, pharmacologists and microbiologists.
Their look at ME/CFS from a neuro-immune perspective appears be paying off, with Dr. Mikovits suggesting it could reap dividends far beyond the disease itself. "We are beginning to realize that our research program at this Institute will have a significant impact on a much larger number of diseases with similar etiologies such as autism, epilepsy and MS."
A Destination for Patients
When it opens in 2010, the Whittemore Peterson Institute for Neuroimmune Disease will occupy 19,000 sq. ft. in the Center for Molecular Medicine on the University of Nevada's Medical Campus in Reno, Nevada. 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.
It has attracted substantial interest and support from patients, other foundations, and a host of international researchers who are already affiliated with it. It is the first Institute of its kind in the world.
Meanwhile, Andrea Whittemore is better but still not well. Ampligen has given her a glimpse of what's possible - she is now able to work part-time. But her dreams of independence, family and a career still take a back seat to this disease. Annette Whittemore is hoping to see her daughter well again, and is fighting for her and so many others with this disease.
As for Annette Whittemore, she couldn't be more excited. Now the director of the Institute and its chief fundraiser, she is fully committed, interspersing trips to Washington, DC, and to overseas conferences with her work in Reno. And despite her family's efforts to sometimes slow her down, she says “I can't imagine doing anything else."
"This project is central to our finding ways to greatly impact the lives of those who suffer from neuroimmune diseases," she states, and her dreams for the Institute include finding a cure, coming up with treatments, and ways to prevent it.
The Tragically Harmful Name
Annette is clear that part of the fight for ME/CFS patients involves coming up with a better name. "The name ‘chronic fatigue syndrome’ is incredibly harmful to all of those who suffer from this debilitating disease…and tragically misleads their families, communities, and doctors into believing it is benign,” she emphasizes.
“The more we learn about this disease spectrum, the more I realize that a name can mean the difference between solving a significant public health threat and watching as millions more become victims to these life-long illnesses. ME or Myalgic Encephalomyelitis is the correct name for the illness that my daughter has had for over 18 years. It is devastating to our family and to all those who love her. Calling it CFS or anything else doesn't lessen the impact of the disease, it only keeps the world from knowing the truth.
“We believe that by bringing committed scientists, physicians, and advocates together, we will find that truth, sooner rather than later."
*Cort Johnson, a noted research reporter, is founder of the website Phoenix Rising: A Guide to ME/CFS (http://www.phoenix-cfs.org) and publisher of the bi-monthly Phoenix Rising Newsletter.