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ACTION ALERT
Dear Florida APF Members and Friends,
P.A.N.D.O.R.A., Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc., is seeking your help in establishing a Neuroendocrineimmune Center of Excellence in Florida and to raise awareness for chronic fatigue syndrome, fibromyalgia, and Gulf War syndrome. P.A.N.D.O.R.A. filed an appropriations request in the amount of $1.5 million dollars for fiscal year (FY) 2007 with the offices of U.S. Senators Mel Martinez (FL) and Bill Nelson (FL) for the establishment of the center. The request was on the bill for the Budget of Labor, Health and Human Services for FY 2007.
Unfortunately, the appropriation request was not included in the Senate language in the Report of the Appropriations Committee.
If you are a neuroendocrineimmune patient, a family member or a caregiver for someone with chronic fatigue syndrome, fibromyalgia, Gulf War syndrome, or related illnesses, you know how important a Center of Excellence is for our community of suffering in Florida and beyond.
We need your help!
We are requesting you contact U.S. Senators Mel Martinez and Bill Nelson today to let them know that although we appreciate their efforts, the lack of funding for P.A.N.D.O.R.A.’s appropriations request is a major setback for our community of suffering. Specifically, we are asking the Senators to request the support of Secretary of Health, Michael Leavitt, and the director of the National Institute of Health, Dr. Elias Zerhouni, for the Center of Excellence and for increased funding for chronic fatigue syndrome research.
P.A.N.D.O.R.A. will follow up on future efforts in pursuing the Florida Neuroendocrineimmune Center of Excellence, including filing another appropriations request through their offices for FY 2008. However, Please Act Now to let the Senators know of the support that exists in Florida for this center!
To have APF send a fax (with a space for your personal message) to the Senators for you, please CLICK HERE.
If you prefer to instead to make a phone call to Senators Nelson and Martinez, CLICK HERE for their numbers and a suggested message. Please log your call (the option to log your call will appear after you are given the phone numbers) and let us know you took action!
Thank you for your help!
Sincerely,
P.A.N.D.O.R.A., Inc. and the
APF Mobilization Team
Background Information:
The Florida Neuroendocrineimmune Center of Excellence would effectively utilize state of the art knowledge concerning the diagnosis, clinical management, treatment, and clinical research of persons with Chronic Fatigue Syndrome (CFS) and related illnesses. The establishment of five (5) centers of excellence in the United States was the number one recommendation from the Chronic Fatigue Syndrome Advisory Committee (CFSAC), in their letter dated August 23, 2004 to Secretary of Health Michael Leavitt. The CFSAC is a committee chartered by Congress to recommend and shape national policy for CFS.
Our community knows fully well that there is a dire need in Florida for physicians who are trained to treat chronic fatigue syndrome and other neuroendocrineimmune disorders. Millions of Americans who have chronic fatigue syndrome and fibromyalgia are in a healthcare crisis, with no qualified access to physicians for appropriate treatment. The situation is highly critical for the 240,000 Floridians suffering with CFS; there is only one CFS specialist in the state of Florida, and it takes two to three years to get an appointment. This scenario is commonly repeated in all 50 states. Fibromyalgia patients are in the same situation, especially in rural areas.
Among the neuroendocrineimmune disorders, CFS has experienced the most neglect. It has been underfunded and ignored. Fibromyalgia follows right behind it. A center of excellence would considerably improve qualify of life for CFS patients, thus enhancing potential and early recovery from CFS and other neuroendocrineimmune disorders.
It is important that Senators Nelson and Martinez are aware of the substantive and significant impact a "Florida Neuroendocrineimmune Center of Excellence" will have in our state and what it means for 240,000 Floridians (according to the latest CDC figures of 4 million Americans estimated to be suffering with CFS) and to an estimated 17 million Americans suffering with neuroendocrineimmune disorders including fibromyalgia, Gulf War syndrome, multiple chemical sensitivities, and related illnesses. Too many lives have been lost to the desperation, abandonment, and trivialization that neuroendocrineimmune disorders receive by many in the medical community; and from employers and individuals who are not aware of the financial, physical and emotional impact these illnesses bring to persons and families in Florida and beyond.
P.A.N.D.O.R.A. will follow up on future efforts in pursuing the Florida Neuroendocrineimmune Center of Excellence, including filing another appropriations request through their offices for FY 2008.
To learn more about P.A.N.D.O.R.A., please visit their website at http://www.pandoranet.info/. 
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