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Read the court case on the research page and learn how insurance companies target CFS, Fibromyalgia, and Gulf War Syndrome.

My real name isn't Caroline T. Anderson. That's my pen name. I've been a reporter for a financial wire service since 1994 and am using a pen name so as not to create a conflict with my work on Chronic Fatigue Syndrome, or ME/CFS, and my career as a journalist. The people at my company think I've gone off the deep end with my obession with CFS. So the pen name is meant to protect them as much as it does me. They may be right, but once I became aware of what was going on, I couldn't remain silent. I thought the world needed a one-stop place to learn about what is going on and a novel seemed like an entertaining way to get the point across to the most people. Who knew the world of medicine was as politcal and money-oriented as everything else in life?  I guess I was naive enough to believe that when it came to people's lives there was a moral high ground that would not be crossed. Wrong!
 
In retrospect, I've probably had Chronic Fatigue Syndrome (CFS) since the age of eight. It was then that I was diagnosed with Rheumatoid Arthritis (RA). I've had varying degrees of good and bad health over the years until sometime in my 50s. It was then that things took a turn for the worse. I went from doctor to doctor until finally I was given a drug called methotrexate, used to treat RA. Methotrexate is basically chemotherapy in a pill. My current doctor says it should have a skull and crossbones sign on the label. It's that dangerous, he says. But it worked, I was functional, although not healthy. I'll get back to methotrexate in a minute.
 
Because I'm a reporter by nature and not just as a profession, I couldn't stop researching my symptoms. I had been a runner for 15 years during a period of extended health, but when I crashed in my 50s any exercise would leave me flat on my back for days if not weeks at a time. It was this so-called exercise intolerance that pointed me in the direction of CFS as being my real problem and not RA. Exercise intolerance is the hallmark of CFS. Somewhere along the line I ran into a video on a web site called neuroexam.com  that showed a Romberg test. 
 
The web site no longer exists but you can find the cache
by clicking here.  When I did the Romberg test, I fell right over. The video suggested that meant I had brain lesions. I went to a doctor in Brunswick, Ohio and performed the Romberg test for him. His response was "Cool!! Do that again!" He ordered an MRI and lo and behold -- brain lesions and lots of them. Also a small brain tumor, but it was nothing serious. The lesions were the real problem.
 
Now I had something real to tell people. I had brain lesions and a brain tumor. No wonder I was sick. I finally was able to get some respect! Please note, that if I had ever been diagnosed with CFS, instead of RA, I wouldn't have been able to get the MRI. People with CFS are denied viral tests and MRIs by insurance companies. No really.
 
More research later I found the Canadian Definition of ME/CFS. I flipped out. It described my life! The Canadians thought ME/CFS was probably caused by a virus. By this time I was living in Washington D.C. and my wonderful GP here, Dr. Joel Ang, ran viral test and found that I had antibodies for Epstein Barr and CMV. Eventually I found the Whittemore Peterson/XMRV study.
 
I took the Canadian definition and my news clips to my rheumatologist and told her I bet I had CFS and this XMRV virus. She wasn't happy with my self diagnosis and was annoyed over my insistance that I had CFS. I'm glad now she wouldn't agree. I've since realized that a diagnosis of CFS is the kiss of death in the medical world. Still it was during that conversation with my doctor, that she said the words that changed everything. "If you have Chronic Fatigue Syndrome, why is the methotrexate working?' That shut me up.
 
But on the way home I thought, I wonder if methotrexate has antiviral properties?  Another search (don't you love the Internet?) and there was my answer. Methotrexate was being studied for its antiviral properties against CMV, one of the viruses that showed up in my blood work. Methotrexate was fighting one of the two viruses I had and that is why I was feeling better..
 
I knew there were doctors out there that specialized in treating CFS with antivirals, so I jumped on an airplane and flew to Florida and Dr. Dantini
www.4fibromyalgia.com. . He looked at my antiviral blood test results and prescribed Famciclovir. I take 500mg, three times a day. During the first 10 days of taking the anitvirals, I really thought I was close to death. It was that bad. But then, gradually, gradually I started to get better and better and better. 
 
What happens is that famciclovir doesn't kill the viruses, but stops them from replicating. As the cells in the human body die off the viruses go with them. Since the virus isn't replicating anymore the new cells don't get infected. I will likely need to stay on this medicine for as long as two years. The exact amount of time needed varies by patient.

So now I am obsessed. What I've discovered about this travesty, that is the U.S.'s response to this epidemic, is mind boggling. I knew I had to tell the story of ME/CFS. I had to get the word out. I had to let people know what was going on. It was a work colleague, who suggested that the tale of my research would make a good mystery novel. Thanks Kelly.
 

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