Discussion in 'General ME/CFS News' started by usedtobeperkytina, Dec 13, 2012.
Good news, website published: http://alneids.org/ Check it out.
Sweet home Alabama, where the skies are so blue!!
I like the excellent name you gave your organization: neuro-endocrine-immune-disease ... of Alabama. I didn't realize 20,000 Alabamans suffered from ME/CFS, but a much bigger number, 144,000 have FM. Quite an imbalance.
Lord I'm coming home to you!! (I wish GA had a state song like you guys)
My cousin went to France on her senior trip. She was shocked to go to a pub and find the band played "Sweet Home Alabama." And the French people there cheered. The song seems to resonate internationally.For those who don't know, Mish is referring to this song:
By the way, Randy Newman, who has ME/CFS, made a song about Birmingham. He was just inducted in the Rock and Roll Hall of Fame.
But you guys have a good song, "Georgia On my Mind" by Ray Charles.
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.
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.
I used to work at UAB--very sad that they have blinders on regarding this disease. Sigh!
Don't despair. Modern medicine has done very little for ME/CFS for FM patients in recent years. But it seems that this is beginning to change. In the the next few years, I believe there will be new drugs that will be able to treat your symptoms, if not your actual illness. I have been embittered, cynical about medical treatment of CFS over the past 30 years. I have seen absolutely no progress. But my attitude is that is beginning to change.
I found a doctor in the Evans, GA area, who believed in CFS. That was in the middle of the XMRV episode, and he fell for the hoax just like I did. Fortunately, he did not hold that against the credibility of the disease. I'm hopeful in the next year or two, some pharmaceutical agent will be on the market to actually alleviate our illness. I will feel vindicated in the physician's eyes.
BTW, I did have to go through two doctors who accused me of being depresssed, exaggrerating. Seeking treatment for this illness is not for the feint of heart. Especially in the southeast part of the country. You sit on that examination table, completely vulnerable, and some country yokel with a medical license calls you a liar. You have to be able to politely excuse yourself and go looking for a new doc. It's not easy.
Sushi, I was told that one of the reasons for the UAB resistance is the whole Chia spine malformation (? on spelling or if I even got it right) incident. I don't know if you recall it. I just emailed the UAB researcher I spoke with earlier this year to tell him of the website. His email bounced. Maybe he retired. I just don't believe that those old stogies with the scars from that incident are going to have a lasting impact. As Mish said, science is trumping past bad experiences. I hope the media attention from the resolution will make UAB contact me, 'nother reason for the website.
However, I do not have the website high enough on search engines. I bought a package from GoDaddy that gives advice on how to tweak the website for better showing. And, I know it may take 6-8 weeks to get full effect. But I really want this website to be at the top when someone searches Google for "Alabama chronic fatigue syndrome."
Does anyone have any ideas for me?
It is the chiari malformation. Was UAB involved in that?
yes, very much so. Here is the whole sordid story.
Patient sued UAB Surgeon. UAB had to pay for defense.
Doctor sued UAB doctors against the surgery for defamation. UAB had to pay for their defense.
Oh, and the surgeon is a true believer: http://www.mountainx.com/article/21269/Controversial-neurosurgeons-license-suspended-again. As of 2009, he was still at it.
And he lived to fight another day: http://www.hvllive.com/2010/12/03/c...ville-surgeon-reinstated-by-nc-medical-board/
Congrats on the website! (My backseat driving suggestion: Pls consider adding more "hardcore" scientific pictures like MRIs and mitochondria so that we can change people's perception of ME)
Very interesting stuff on chiari too. Sounds like they have been beaten up pretty badly by medicine just like us.
Will consider, Justin.
Thanks for considering.
You can also try a Google Site Search
Separate names with a comma.