Annette and Harvey Whittemore pulled off something of a miracle when they convinced the state of Nevada to help them build the first chronic fatigue syndrome (ME/CFS) research, treatment and eductation facility in the world.
The medical establishment, after all, has been almost as hostile to ME/CFS patients as the disease itself. The Whittemore-Peterson Neuro-immune Institute is an affront to the medical community’s disregard for this disease – a beachhold of hope that chronic fatigue syndrome (ME/CFS) patients can cheer about. But Annette Whittemore has always had a large vision and she wants more – much more.
What do armies do after they establish a beachhead in hostile territory? They move on – and that’s what Annette Whittemore proposes to do; if she has her way the WPI will be just the beginning of a larger ‘invasion’ of the medical establishment.
Stand Up for M.E. In the ‘Stand Up for M.E’. project she proposes that the federal government build a network of five neuro-immune centers in the US that revolve around a central hub at the WPI. The centers would cost $75 million dollars over five years. This is an audacious proposal indeed but no more audacious than having the small state of Nevada build the first chronic fatigue syndrome center in the world on it’s University campus.
It’s also very timely. This is a unique period in the history of the NIH. With its 30% boost from the Obama stimulus package (10 billion dollars) it’s simply awash in money and it’s using most of it to build structures and buy equipment i.e. to build just the kind of facilities that Annette proposes. This opportunity will not come again.
It’s also a dangerous time. The winners are going in lock in federal money for decades to come which will, of course, leave less for everyone else. If we don’t get in now it’s going to be all that much harder to get funds in the future.
Think of it – five WPI’s! The federal budget on ME/CFS quadrupled. Real research centers. Real treatment centers. The kind of research you want done finally being done – in large quantities. The real possibility of a breakthrough. But if it’s going to happen it’s going to happen now. The window of opportunity is open now and but it’s closing.
Can Annette Whittemore succeed on the federal level? In fact the WPI has already received substantial federal help. No one should forget either that the Majority leader of the Senate is Senator Harry Reid of Nevada, a strong chronic fatigue syndrome (ME/CFS) supporter for many years. The entire Nevada delegation is behind her.
What she needs now is us. She particularly needs the help of people who are represented by politicians sitting on the health committees. Please communicate with your elected officials and ask them to support this project. Annette has provided a sample letter below and please e-mail when you’ve done so.
Majority Members
Tom Harkin (D-IA), Chairman
Arlen Spector (D-PA),
Daniel Inouye (D-HI)
Herb Kohl (D-WI)
Patty Murray (D-WA)
Mary Landrieu (D-LA)
Richard “Dick” Durbin (D-IL)
Jack Reed (D-RI)
Mark Pryor (D-AR)
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Minority Members
Thad Cochran (R-MA)
Judd Gregg (R-NH)
Kathryn Ann Bailey “Kay” Hutchinson (R-TX)
Richard Shelby (R-AL)
Lamar Alexander (R-TN)
SAMPLE LETTER
Re: The National Center for Neuro-Immune Disease Research with Regional Medical Research Centers
Dear Senator/Congressman____________:
I am writing to urge you to support any congressional efforts to create a new comprehensive center for the study of ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) and related neuro-immune diseases in the State of Nevada and five regional medical research centers across the United States. Up to four million people in America are currently suffering from Chronic Fatigue Syndrome; millions more suffer from similar diseases with no known cause. With the proposed partnership, great progress and strides could be made in the research of these diseases that have affected so many Americans for too long.
The new National Center for Neuro-Immune Disease Research would be collaborative public/private partnership involving the University of Nevada, Reno and the Whittemore-Peterson Institute for Neuro Immune Diseases (WPI). The regional centers would serve as collaborative partners of the national center sharing clinical research resources translating to the most effective patient care in the shortest period of time.
The Whittemore Peterson Institute has already established a significant research program in ME/CFS at the University of Nevada and will open in the new Center for Molecular Medicine, a 100,000 sq ft. medical research building, in the fall of 2010. The WPI research program is expanding its reach into other neuroimmune diseases and the cancers that most often develop in these patients. We are “shovel ready” for this important leadership role and ask for your immediate support. We are requesting funding levels of 12 million dollars a year for five years for the National Research Center and 3 million per year for each additional regional center or a total of 75 million dollars for the entire project. If only 10 percent of the patients with ME/CFS were able to return to work, the US would save over 1 billion dollars in lost wages and billions more in health care costs.
Funds will be used to support various activities including, but not limited to, seed grants, equipment, facilities, patient care, clinical trials, education, public outreach, and the training of graduate students, medical students, and residents. The new Institute and center will run cooperative clinical diagnostic and treatment programs for patients with neuroimmune diseases such as ME/CFS and fibromyalgia, facilitating clinical trials of promising new diagnostic methods and treatments. It is important that all patients with these neuroimmune diseases, throughout the United States, have access to the highest quality of care.
A program of this nature would support the needs of a huge population of patients who are truly underserved. Creating this partnership brings important translational research to the forefront in this medical field. Again, I urge you to support this effort and collaboration for neuro-immune disease research and I sincerely thank you for all you’ve done for our community and state.
Regards,
Annette Whittemore
Founder and President
Whittemore Peterson Institute
for Neuro Immune Disease
6600 N Wingfield Pkwy
Sparks, NV 89436
775-348-2335 Phone
775-348-2350 Fax
annette.whittemore@wpinstitute.org