P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.), Contact: Marly Silverman, Cell phone: 954-629-0976 Office: 954-783-6771 – E-mail: firstname.lastname@example.org - www.pandoranet.info Coral Gables, FL – Help us to get Congress to appropriate $1.5 million dollars for a Neuroendocrineimmune Center of Excellence in Florida and to raise awareness for Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM) and Gulf War Syndrome (GWS). NOTE: As Hurricane Wilma approaches us, the needs of persons afflicted with CFS, FM And GWS are even more pressing. Hurricane Shelters and their staff, including the ones allocated for persons with special needs are not familiar with these type of illnesses. Persons with Neuroendocrineimmune disorders (PwNEIDs) have invisible disabilities which many times prevent them access to special shelters.
Imagine waking up every morning feeling like a truck ran over you, if you manage to even sleep; experiencing bone-crushing fatigue so severe and debilitating that you can’t brush your teeth or comb your hair; having flu-like symptoms 24/7, including body-wide pain, excruciating headaches, brain fog, sore throat, fever, swollen lymph nodes, night sweats, sleep disruption, and disorientation; severe allergies to your environment; rashes, short-term memory loss, and chronic respiratory infections
Can you envision not being able to take care of your children/family and crawling in and out of bed because your pain and fatigue are unbearable? Of parking your car in your usual spot, but can’t find it an hour later? A refreshing shower is unbearable because the spray on your skin increases your pain. Imagine, not being able to walk or lift your head because the room has been spinning, nonstop, for days. Of going from doctor to doctor searching desperately to learn why you are so sick, but finding no answers. Are you going “crazy”? Blood tests conducted don’t indicate any known illnesses. Doctors say, “It’s all in your head. Here’s a referral to a psychiatrist. Envision being abandoned by family, husband/wife, and employers because you can’t function socially, sexually or be productive. Many are snickered at by neighbors and colleagues because they are too sick to join them in living a normal or demanding life.
Imagine you are a child/teenager suffering these symptoms. You will be forever scarred by the medical and school systems. You may never experience the joys of finishing college, getting married, having children, earning a salary for a job well done. However, it gets worse. Imagine after years of searching for a diagnosis, you find there is only one physician specialist in our state capable of treating CFS, and only a handful of specialists for FM. If your child has CFS, there is not one single pediatric specialist in Florida, and the school system will punish your child for missing school and you as the confused parent will be prosecuted for protecting your child. Imagine not getting disability payments from insurance policies or Social Security because these illnesses “don’t exist.”
These situations are a fact of life for millions of people who suffer with Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), and Gulf War Syndrome (GWS). These illnesses are syndromes affecting multisystems (neurological, endocrinological, and immunological) and are robbing patients of health and abilities. Current research is identifying them as neuroendocrineimmune disorders/dysfunctions, but still lacking specific biomarkers. CFS, FM, GWS are life-long (chronic)illnesses. There is currently no cure. Research funding is dismal. Of all illnesses researched by the NIH, they rank towards the last 6 on their list.
The Centers for Disease Control and Prevention (CDC) estimates there are 800,000 to 2.5 million Americans with CFS and many are undiagnosed. Based on the lower estimate, the CDC calculated an economic national impact reaching $9.1 billion dollars a year in lost productivity, not including disability and medical expenses. It is estimated that fibromyalgia affects 8 to 10 million Americans. Its economic impact is estimated at over $20 billions dollars yearly; yet, no one is paying attention! Is it because 85 to 92% of the CFS/FM population is primarily women? We need answers and increasing research. Please join P.A.N.D.O.R.A. in our mission to find a cure for CFS, FM, GWS, and related illnesses and publicize the need for a Neuroendocrineimmune Center of Excellence in Florida.
P.A.N.D.O.R.A.’s mission is to be One Strong Voice for Many © by raising awareness, providing support and educational resources, establishing partnerships, supporting increase research, encouraging creation of empowerment groups, organizing conferences, and advocating for quality of life issues for persons with Neuroendocrineimmune Disorders. These efforts will assist patients with PwNEIDs and their families in leading productive and fulfilling lives.
Marly C. Silverman
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II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.