Press Release: May 5, 2013, PANDORA
Clay, AL, May 05, 2013 –(PR.com)– On April 30, the Alabama legislature passed a resolution saying the governor and all other interested parties should work toward creating a center and improving access to knowledgeable health care for patients with neuro-endocrine-immune diseases, including fibromyalgia, ME/CFS and Lyme disease. A 2012 PANDORA Org survey showed 61% of Alabama NEIDs patients — more than in neighboring states — are not satisfied with their medical care and do not believe their physician is adequately knowledgeable of their disease.
The survey results motivated St. Vincent’s Health System to sponsor a series of courses for their physicians and nurses to learn more about diagnosing and treating these debilitating and often misunderstood diseases. The first course will be on May 7 with Harvard Medical School professor Dr. Anthony Komaroff giving a one-hour course on ME/CFS, also known as chronic fatigue syndrome, at St. Vincent’s East. Lori Chapo-Kroger, president of the national advocacy organization PANDORA Org, is traveling from Michigan to be the patient example in the ME/CFS course. The other two illnesses included in the course series are tick-borne illnesses, such as Lyme disease, and fibromyalgia.
“The best way to correct this poor access to knowledgeable health care is through physician education and creating a center for these diseases as a group,” said Chapo-Kroger. “Because of the support of patients, hospital administrators and state legislators, Alabama seems to have fertile ground for creating an NEI Center, an important goal of our organization.”
According to national prevalence studies, approximately 20,000 Alabamians have ME/CFS (one in 240) and 144,000 have fibromyalgia (one in 40). Lyme disease is the fastest growing vector-borne disease in the nation, and people have come become infected with the Lyme bacteria from exposure in Alabama.
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The PANDORA Org survey also showed that 61% of Alabama NEIDs patients searched for an accurate diagnosis for over two years before receiving one, and 59% of Alabama NEIDs patients see four or more physicians before receiving an accurate diagnosis. Some travel to other states to find a knowledgeable physician.
PANDORA Org worked with sponsors Sen. Slade Blackwell, Rep. Allen Treadaway and Policy Advisor to Senate Majority Leader Michael Ciamarra, all in Alabama, to have the resolution written and passed. Gov. Robert Bentley is expected to sign this resolution soon.
Chopo-Kroger will be speaking at the city of Clay council meeting on May 6 when they will consider passing a proclamation that recognizes May 12 as International NEIDs Awareness Day.
A local PANDORA Org representative has also been speaking to Alabama Rotary Clubs, informing them about NEIDs in a presentation titled “The Other Polio.” ME/CFS was referred to as “atypical polio” and “abortive polio” until the 1950s because the symptoms are similar to polio, and ME/CFS also occurs in outbreaks.
NEIDs are also referred to as “complex chronic diseases” or “chronic multi-system diseases” and include myalgic encephalomyelitis / chronic fatigue syndrome, fibromyalgia syndrome, chronic Lyme disease, Gulf War illness and multiple chemical sensitivities / environmental illness.
The Alabama NEIDs Solutions website has links to the resolution, the flier advertising the St. Vincent’s May 7 course and to the PANDORA Org website, PANDORAorg.net.
About PANDORA Org: PANDORA Org is a 501(c)(3) nonprofit organization headquartered in Wyoming, Michigan. PANDORA Org improves NEIDs patients’ lives through assistance, advocacy, education and disease awareness.