usedtobeperkytina
Senior Member
- Messages
- 1,479
- Location
- Clay, Alabama
Good news, website published: http://alneids.org/ Check it out.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Good news, website published: http://alneids.org/ Check it out.
Although Atlanta is bigger than Birmingham, I felt the same way. UAB is the largest employer in the whole state. They are a college, hospital and research center. Yet, they have nothing for our disease. Last research they did was over 6 years ago. In Jan. of this year, they announced $100 million for innovative research. I pursued getting some of that money for our disease. I ran into obstacles.
Everyone here, the clinicians and the patients are in the closet. We only have a few support groups in the whole state who meet. It's ridiculous. We had a Middle East prince come to UAB for surgery, yet I had to go to Atlanta to find someone willing to diagnose and treat me for this disease.
This effort is very slow, much slower than I would like. But, it won't happen without trying. It's a step-by-step process.
It is amazing how something seemingly small can mean so much. As a CFS patient living in Atlanta, GA, this site just buoys my spirits. CFS can be so isolating and here in the southeast there are scant resources. I am a little jealous that Alabama has created such a site before Georgia. I live basically down the street from the CDC and there are several highly respected medical hospitals in my area. Still, I am forced to drive, (or ride) one hour to see the only "local" doctor I know of who treats CFS patients. I am in bed 80-90% of any given day. With all these grand institutions nearby nobody treats CFS. With the increased awareness of this website, Phoenix Rising and others like it, maybe one day I will get out of bed again and resume my life.