Alabama NEIDs Solutions is a PANDORA Org project to promote establishing a clinical care and / or research center in Alabama for neuro-endocrine-immune diseases.
When standard tests do not show an abnormality, many patients are referred to one specialist after another, creating a merry-go-round of suffering and frustration, because no one specialty covers these multi-system diseases.
Imagine that when the first doctor gets the tests back as normal, he refers the patient to the NEI Center. There, the person receives an accurate diagnosis for the complex chronic disease and starts treatments within a month. A one-stop-shop.
If you would like to join the group working to create an Alabama center for these diseases, please email Tina Tidmore.
On May 13, we gave a presentation to the Opp, Alabama Rotary Club on neuro-endocrine-immune diseases and the lack of access to expert healthcare in Alabama.
On March 25, we gave a presentation at the International Association of ME/CFS medical conference on our work in Alabama. While there discussed with a Stanford researcher assisting him eatablish a neuroinflammation lab in UAB that will focus on pain and fatigue conditions.
A physiatrist expressed interest in being the medical director of an NEI center, as long the majority of clinic time is done by a nurse practitioner or other doctor. The search continues.
A primary care physician in St. Vincent's East campus medical offices attended the International Lyme and Associated Diseases medical conference in San Diego with grants from PANDORA Org and from lymedisease.org. She later decided to keep her primary care practice instead of focusing on NEIDs.
On June 3, we met with a clinician associated with St. Vincent's East asking if she is interested in working at a center for neuro-endocrine-immune diseases. At first she said no, but called back a week later asking for more information. We are arranging another meeting.
On May 12, Alabama Gov. Robert Bentley proclaimed May 12 as Fibromyalgia Awareness Day.
On May 2, Gov. Robert Bentley signed Senate Joint Resolution 64 that says the governor and all interested parties should work toward increasing medical professional education in neuro-endocrine-immune diseases and work toward creating clinical care and research centers for them.
On April 30, the state legislature passed Senate Joint Resolution 64 that says the governor and all other interested parties should increase medical professional education and create a clinical care center for neuro-endocrine-immune diseases.
On April 25, the Gardendale, Alabama Rotary Club listened to a presentation about neuro-endocrine-immune diseases and the challenges these patients experience in Alabama.
On March 13, the Birmingham East Alabama Rotary Club listened to a presentation about NEIDs and the challenges these patients experience in Alabama.
A new website was created to find more patients and help with the physician education and NEI Center efforts and provide connections to other patients. It also provides statistical information on the diseases in Alabama.
A hospital system in central Alabama made arrangements with a respected ME/CFS clinician to give a physician training course on ME/CFS in May 2013. They expect about 70 physicians and nurses to take the course. When the contract is signed, we will announce the physician and the exact date. They have also said they will have similar courses on fibromyalgia and Lyme disease given by local physicians.
A proposed resolution to be presented to the Alabama Legislature during the 2013 session was drafted with the assistance of Michael Ciamarra, the policy director under Senate Majority Leader Jabbo Waggoner. Alabama Senator Slade Blackwell will be a co-sponsor of it, and Alabama Representative Allen Treadaway said he would sponsor it in the House. The resolution gives known facts of these diseases and urges all stakeholders to increase physician education in these diseases and create an NEI Center.
Please help us by donating toward creating an NEI Center and educating medical professionals about NEIDs.
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