TELEVISION PARK– We’re taking a look at a mysterious and debilitating illness that strikes suddenly and robs people of the joy of life.
Jennifer Bray is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her it’s all in her head, she turns her camera on herself as she looks for answers and fights for a cure. She discovers a hidden world of millions confined to their homes and bedrooms by Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome.
So, what is ME? It’s a systemic Neuroimmune condition. An estimated 15 to 30 million people have this, many don’t even know they have it. Researches believe ME is triggered by a virus. It’s gone by many names since the 1930’s, Atypical Polio, Icelandic Disease, Royal Free Hospital Disease, ME, and most recently, Chronic Fatigue Syndrome, a name that has inflicted its own sort of perceptual harm.
Take a look at this. The treatment of today’s ME/CFS patients is comparable to that of lobotomy patients decades ago. When the full history of ME/CFS is written on day, we will all be ashamed of ourselves. And that’s from a Norwegian doctor who’s a professor of Pediatrics and an advisor to the World Health Organization. Watch the trailer now for Jennifer’s movie, Unrest.
A North Augusta woman, Marcie Myers, is one of many ME patients who have experienced uncertainty, confusion, and even disbelief from the medical community and society as a whole.
Marcie joins me today, and Marcie, I know it is not easy for you to get out. You have days when you can’t at all. We’re lucky that today you could and that your friend was able to get you here. I am really interested to get your story, because you’re someone local here who suffers with this, which is portrayed in the movie, Unrest. You had a medical background.
Yes, I still try and keep up with it, but yes, I did, I had a BSN from what was called Medical College of Georgia back then, was working for South Carolina Department of Corrections as a Nurse Manager for two state prison clinics, 800 inmates, a lot of responsibility.
How old were you when your symptoms started?
I believe I was about to be 39. I did not actively have a virus, like Mononucleosis or CMV, or the human HSV, the Herpes Simplex Virus, which comes in many, many, there’s probably 15 different kinds of them. But my body’s reacting to viruses, but none of them were active.
So, from the get go, feel like there’s a viral connection for me at any rate, and I had a low grade fever from 99.8 to 100.5. Not 105, but 100.5. But that will leave you feeling terribly miserable 24/7, having that kind of a fever. And that went on for 20 years.
When does the fatigue become debilitating? I mean, when do you just get to the point–
When I crash, that’s the word– they call it crash for some reason. If I have too many people or circumstances being pushed at me, so to speak, too many choices, it can even be good things like a surprise birthday party. It doesn’t have to be negative, but too much stimulus, incoming. And if I can’t somehow circumvent and have less stimulus, then I will crash. And for me, it’s more of a mental. Some people have a lot of problems with physical, like if they go walk around the block, it will make them crash. I, myself, don’t have such an issue with the physical, I have an issue more so with the mental. Too many thoughts, too many things to think about.
But so many physicians just disregard it, and they don’t know. So, if you look up the symptoms to CFS and you truly believe that you fit into that category, of course they eliminate all the other possibilities, just like with a lot of other disabilities.
You rule out all the other things and then you come up with the diagnoses, and that’s what it is with Chronic Fatigue Syndrome right now. Now, the research has found a lot of things that are not right but they haven’t found what started it, what caused it. It’s strongly believed to be genetically, have a genetic propensity, but then an environmental factor has to set it off. There’s been people that have talked about having a car wreck and developing it consequent to the car wreck, so it’s not always a high fever virus circumstance, although most of the time that’s what people will describe.
Marcie, you’re really brave to talk to us and if any doctors or medical folks are out there are watching and you want to talk to Marcie, just contact me and I’ll tell you how you can get ahold of her. Marcie Myers.