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Advocacy Update - May 2005

May 12th is Neuroendocrineimmune Awareness Day. We encourage everyone to participate by writting or meeting with your state and national leaders. Here is Sample introduction and list of points to make in your letters or face to face meetings with your Congressional Leaders.

INTRODUCE YOURSELF AS A CONSTITUENT AND TELL YOUR PERSONAL STORY USING THE FOLLOWING FORMAT:

I was diagnosed with CFS/CFIDS in _______, (also mention if you have Fibromyalgia as well), since then I have not been able to work and I am on disability. It is very difficult to find medical care for CFS patients. In Miami Dade County with a population reaching over 2 _ million persons, there is only one specialist, Dr. Nancy Klimas- who currently treats CFS patients.

In Broward County with a population of 1,731.347, there is only one specialist Dr. Nancy Klimas who currently treats CFS patients.

In Palm Beach with a population of 1, 216.282, Dr. Nancy Klimas again is the only physician treating CFS patients.

Because of the difficulties, CFS patients have to incur:

1. ³I am here today to ask you to support the efforts of P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organizations for Research and Advocacy, a patient advocacy organization in the State of Florida, in establishing a Center of Clinical Excellence for Neuro-Endocrine-Immune (here hyphenated so folks can practice reading it) Disorders - Chronic Fatigue Syndrome and related illnesses, at the University of Miami/ VA Hospital in Miami, Florida. I am also asking you to support the efforts on a national level of the CFIDS Association of America, Inc., a national patient organization dedicated to conquer Chronic Fatigue Syndrome/CFIDS.

2. The Chronic Fatigue Syndrome Advisory Committee (CFSAC), a subcommittee of the Department of Health and Human Services, has proposed to the former and to the current Secretary of Health and Human Services, that 5 (five) Centers of Excellence be established in the United States.

3. The main goal of P.A.N.D.O.R.A for the next 2 years is to engage in fund raising activities in our community to assist Dr. Klimas in upgrading the current CFS Center now located at the University of Miami and converting it into a Neuro-Endocrine-Immune (here hyphenated so folks can practice reading it) Center of Excellence. P.A.N.D.O.R.A. will need to rise in the next year, at least $125,000.00 in private funds for the upgrading project and to fund P.A.N.D.O.R.A.¹s overall efforts. The National Institute of Health (NIH) guidelines for the establishment of Centers of Excellence ought to include financial support to the project in the tune of $1.5 million each year for the first five years, renewable. It requires your strong legislative support. An appropriation bill has to be implemented, supported, approved and funds be allocated to make sure this task is accomplished.

4. Did you know that 90% of CFS sufferers are women? (According to the CDC report presented at the Jan and April 2005 CFSAC meeting in Washington D.C.) Did you know that 82-85% of Fibromyalgia sufferers are also women? (Figures listed on the NIH web site.) In the state of Florida now there is not one medical county, city or state facility offering medical care for persons with CFS, Fibromyalgia and other related illnesses. If a patient has better financial means he or she can still search locally or nationwide for a physician, but for the disabled without a job or insurance, the task is extremely difficult. It is a serious issue to be sick and not be able to have access to a physician! It is even more serious when we realize that such a lack of medical facilities is affecting thousands of women in Florida and in the U.S.

5. The proposed Miami site is a perfect location for Neuro-Endocrine- Immune (here hyphenated so folks can practice reading it) Center of Excellence for many reasons.

… Its geographical location Miami Dade County and its close proximity to Broward, Monroe and Palm Beach counties; and is close to two International Airports
… Demographics Urban and Rural Areas near the proposed center
… Prevalence of CFS in our state based on a 1999 report by DePaul University (Hand out the CFS Prevalence Sheet, Pat Fero from the Wisconsin CFS Association created based on De Paul University 1999 epidemiological survey and updated to the latest 2004 Census Bureau U.S. population figures.) It is estimated that at least 260,000 persons have CFS in the State of Florida and of which 90% are women.
… Higher prevalence in the Hispanic community (Mexican Americans and Puerto Ricans 726/100,000 and African American Community - 337/100,000
… The fact that Dr. Klimas is one of the world¹s leading Chronic Fatigue Syndrome, Gulf War Syndrome, and AIDS Researcher. Her scientific and distinguished career in the field of immunologist and her outstanding dedication to finding a cure for CFS and related illnesses is of extreme value to the neuro-endocrine-immune patient population. A CV for Dr. Klimas is available upon request.
… We need to increase our support to her efforts in finding a cure for CFS and related illnesses.

6. We already have the support of House Representative, Congresswoman Ileana Ros-Lehtinen as the proposed Neuro-endocrine-immune Center of Excellence is to be located in her district. However, she needs your support too. As your constituent, I seek your support in helping P.A.N.D.O.R.A. on their efforts in establishing the first Neuro-Endocrine- Immune Center of Excellence for Chronic Fatigue Syndrome and related illnesses, at the University of Miami by lending your voice to Congresswoman Ileana Ros-Lehtinen and support her in specific legislation for the establishment of the Center of Excellence in Miami, Florida

7. I also ask that you support P.A.N.D.O.R.A. s efforts in acquiring $1,000,000 (one million dollars) over a 5 year period for the establishment of this Center, from our Florida state government. P.A.N.D.O.R.A. will request the assistance from our state legislature and from the Florida Department of Health, for specific funding for the creation of a CFS and related illnesses - manual for physicians, nurses and medical practitioners and hand outs to be given to the public to provide education and awareness to these illnesses.

8. Facts: CFS/CFIDS is over four times more common than HIV infection in women (125/100,000), and the rate of CFIDS in women is considerably higher than a woman's lifetime risk of getting lung cancer (63/100,000) and breast cancer (26/100,000)

9. Facts: Did you know that according to the CDC report of June 24, 2004, the economic annual impact in our national economy is a whooping 9.1 Billion dollars? It is based on an income of $20,000 per year in loss productivity and on the conservative estimation prevalence rate dated back to 1999. Those 1999 figures estimated that there were at least 800,000 persons in the U.S. suffering from CFS. The current estimation is now that perhaps millions of women (90% of all figures), men and children are suffering with Chronic Fatigue Syndrome.

10. Facts: According to the CFIDS Association of America, Inc- (who I am lobbying with today) the National Institute of Health, (NIH) has budgeted $6 million each year for the last three fiscal years. For an illness that may result in death, and effects between 1% and 1.5% of the population, it translates to $7.50 per patient based on the now outdated prevalence figures of 1999. It is sad to see that CFS patients are not given a strong priority within the NIH.

11. However, it gets worseŠAfter the CFIDS Association analyzed the types of research under the heading of CFS, it was discovered that over half of the studies were not for CFS but for studies with the word fatigue in the summary. Chronic Fatigue Syndrome and general fatigue are not the same illness. The NIH is giving a new meaning to ³creative accounting² tools by double listing the same funds for illnesses which may overlap or mimic CFS. The illnesses are Fibromyalgia and Gulf War Syndrome. The NIH is also including research conducted on Lyme disease, Orthostatic Intolerance, rheumatic diseases and multi-symptom illnesses etc. as if these research studies were for CFS. It is worrisome to see that the adjusted amount found by the CFIDS Association for the FY 2003 was below $4 million, the lowest amount since 1992. (The CFIDS Association Report presented to the CFSAC on September 27, 2004) Those prevalence figures are by now grossly underestimated and they translate to LESS than $5 being spent per CFS patient.

12. Please support the National Pain Care Policy Act (H.R. 1020) is the most comprehensive pain care bill ever introduced in Congress. Representative Mike Rogers (MI-8) is the bill¹s sponsor; 42 other members of Congress have signed on in support.

13. Finish with something personal based on your experience as a CFS patient.

14. Thank the staff person for their time and ask them to stay in touch with P.A.N.D.O.R.A. and the CFIDS Association of America, Inc.

DEFINITIONS: The most common related illnesses are: Gulf War Syndrome (GWS), Fibromyalgia (FM), Neurally Mediated Hypotension (NMH), Orthotastic Intolerance (OI), Low Blood Volume, and Irritable Bowel Syndrome (IBS).