Don’t tell this CFIDS sufferer to ‘snap out of it’
Merry Anderson could bend your ear for hours about the condition she has, if only she weren’t so darn tired.
“Sometimes, after just going out on an errand, I am totally wiped out the next day and can barely get out of bed,” said the 50-year-old sufferer of chronic fatigue immune dysfunction syndrome, called CFIDS for short.
Don’t tell her to just “snap out of it,” “take a walk” or “get up and get going, Merry,” because she’s heard all that before when it comes to CFIDS.
She’s heard it for 12 years, starting when she was an athletic 38, jogging and walking regularly to stay in shape, happily working in accounting for the state of Nevada, unaware that her immune system was starting to struggle and would soon tax her body of its energy. Anderson, a native Nevadan, lives in Johnson Lane.
“I used to run every morning before work with a friend, and I started to not be able to run, but had to walk, and my friend complained about me to my sister,” Anderson said. “I went to see a few doctors, but didn’t get a clear diagnosis right away.”
Doctors gave her a range of diagnoses, from depression to menopause, recommending treatments that included antidepressants, estrogen and even a partial hysterectomy.
What Anderson didn’t know was that if she was to be sick with chronic fatigue, one of the country’s best CFIDS experts, Dr. Daniel Peterson, was only an hour away in Incline Village. When she finally got in to see him after a six-week wait, Peterson made the diagnosis that changed her life.
“He did many blood tests on me and diagnosed me with chronic fatigue immune syndrome,” she said. “After the diagnosis, it was at least a relief to know I wasn’t crazy.”
Anderson stayed at her job with the state for several years, but in 1994, she finally had to leave.
n About the syndrome. Chronic fatigue immune dysfunction syndrome, which is also called chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), affects more than 800,000 American men, women and children. More Americans suffer from CFIDS than breast cancer, lung cancer or HIV infection.
Symptoms include incapacitating fatigue, muscle and joint pain, information processing and concentration problems, sore throat, tender lymph nodes, headaches and more.
Although there is increasing evidence of an underlying biological disorder involving the brain and immune system, there is no known cure.
A new study by DePaul University estimates CFS at approximately 422 per 100,000 Americans, with an estimated 90 percent of patients undiagnosed. The frequency of incidence in adolescents is increasing, Anderson said, and the disorder is three times as prevalent in women as in men, similar to other autoimmune diseases such as multiple sclerosis and lupus.
n Her future. Currently, Anderson is participating in a medical experiment involving an antiviral drug, Ampligen. She has just begun the twice-weekly intravenous courses of the drug. Traveling to Incline Village twice a week involves a huge effort on her part and a long recovery after each treatment.
“So far, I haven’t noticed an improvement,” she said. “But I’m trying to stay optimistic. If this doesn’t work, I’ll go to homeopathic remedies.”
In spite of a dozen years of living with CFIDS, Anderson is upbeat and has a good sense of humor.
She would like people to know that this isn’t the yuppie flu, it isn’t all in the mind, and CFIDS sufferers really do want to get better.
“After 12 years, though, sometimes I wonder what I’d do if I got better,” she said. “I don’t know. I think I’d take some computer classes so I could work out of my home.”
Anderson said sometimes she wishes – if she has to be sick – that she had a disease with a more definite cause, symptoms and cure.
“I knew a woman with CFIDS who said she’d had cancer twice and that she’d rather have it again than chronic fatigue syndrome,” Anderson said. “The way I look at it, every 10 years, life gives you a basket of things to deal with, and this is mine.”
n For more information. Call the CFIDS Association of America, (800) 422-3437 or go to the Web site, http://www.cfids.org.
Anderson can be reached at 267-9533, and there is a CFIDS support group in Reno, (775) 789-3627.