State funding for the Nevada Institute for Neuro-Immune Diseases – once thought to be assured - is in immediate peril.
Bill AB316 and Bill AB500 will come up for a vote this week (May 14-18), and it’s essential that advocates make their voices heard immediately, to convince Nevada’s legislature of this Center’s great importance.
A number of legislators are challenging the state’s budget allocation of funds for the building of the Nevada Institute for Neuro-Immune Diseases, plus monies for support of ongoing operations. They’ve reportedly labeled these allocations “nonessential.” And the cause of CFS research has not been helped by continued media references to a research center for “chronic fatigue.”
This will be the first public CFS Research Center in the U.S.
The Institute, to be constructed at the University of Nevada, Reno's School of Medicine, will provide a home for CFS and other neuro-immune disease research, and will house a tissue bank and a treatment center where medical students will be trained. Pioneering CFS physician Dr. Daniel Peterson, MD, will be the medical director, and Dr. Kenny DeMeirleir, MD, will be an informal advisor.
What You Can Do NOW
The Whittemore family has pledged $5 million for support of the Nevada center. Annette Whittemore and her daughter Andrea Whittemore, who has CFS, have issued a plea to the CFS community asking that you use the URL below to provide comments on Bills AB316 and AB500 to Nevada legislators. Even if you are not from Nevada, or even from the U.S., please let them know this bill is being followed with concern by CFS/ME patients everywhere. Simply:
1. Go to Share your Opinion with the Legislature https://www.leg.state.nv.us/74th/opinions/Poll/?CFID=222391&CFTOKEN=48676058
2. Select or type in Bill AB316
3. Add your comments
4. And vote yes "for" this bill.
5. Repeat for Bill AB500
5. Please send this to all of your family and friends asking for their support
Possible Talking Points
You might want to use talking points such as these:
n More people have CFS than have lung cancer, lupus, or multiple sclerosis, yet not one publicly funded Center for CFS research exists.
n A recent study estimates CFS costs the U.S. economy $25 billion a year, yet the NIH and CDC combined spend less than $10 million on CFS research.
n Building a CFS center in Nevada will both help people with CFS and make Nevada the leader in the research and treatment of what Dr. William C. Reeves, MD - lead CFS researcher with the CDC - has called “a major health public concern."