by Susan Kreimer, August 10, 2005
Drop-dead exhaustion hovers. Routines that are second nature now feel like monumental tasks. Getting out of bed consumes precious energy. What doesn't?
Your doctor, employer, even family and friends, may assume you're lazy. They're wrong. This is chronic fatigue syndrome—and, no, you're not imagining it.
An estimated 500,000 to 800,000 of the nation's adults experience similar symptoms. Only about 15% have been diagnosed with chronic fatigue syndrome. Despite the sobering statistics, many health-care providers contend it's all in the mind.
When CFS first commanded attention in the mid-1980s, "it was so 'new,' people wondered if it was real or serious. Today, we know it is both," says Marcia Harmon, spokeswoman in Charlotte, N.C., for the CFIDS Association of America, which stands for chronic fatigue and immune dysfunction syndrome—another name for the condition.
More research needs to be done. "This is an orphan disease. It has been very neglected," says Dr. Richard Podell, a professor at Robert Wood Johnson Medical School in New Brunswick, N.J., and an internist in Springfield, N.J.
Until then, the underlying mechanisms—and a cure—remain shrouded in speculative theory. "While the cause or causes of chronic fatigue syndrome remain uncertain, there is growing evidence that the illness involves abnormalities in the brain, the autonomic nervous system and the immune system," says Dr. Anthony Komaroff, a professor at Harvard Medical School.
Two-thirds of patients are reproductive-age women. "It's not genetic, but we have seen a familial relationship," says Dr. Derek Enlander, an internist on the upper East Side and author of the CFS Handbook.
"It may be more of a transmissible disease," says Gail Kansky, president of the National CFIDS Foundation in Needham, Mass. She and her adult son and daughter have CFS. In some families, "I've found parents who've actually come down with the illness after their child had been sick for years," Kansky said.
Practitioners continue to speculate about this mysterious illness, also known as myalgic encephalomyelitis. "Most of the time," Podell explains, "you see isolated cases and all their friends and family are fine."
One observation appears convincing: Although secondary depression often strikes CFS patients, Enlander maintains, "this is not the primary cause of the disease."
One woman's battle
Jill Gamble had an active career until chronic fatigue syndrome took over her life. "It hit me like a brick," she recalls. "I was never a complainer and always a doer."
The illness zapped every ounce of strength. "Exhausted all the way down to my feet, I woke up one morning and I literally could not move my legs," says Gamble, 52. "They felt like they were in plaster or concrete." Her state of mind had changed, too. "I was, like, in a fog - or a zombie state."
In 1990, Gamble's career plans began to fall apart. She had worked long hours in fund-raising and intended to leave her job, aspiring to launch a nonprofit organization with a friend. Her dreams, sidetracked by illness, never materialized. And she couldn't work again.
Her college sweetheart and husband of 27 years, Jim Gamble, 47, stood by her. A self-employed insurance consultant, he works at home in Chelsea.
"I know many women who have this disease and their marriages broke up," she says. Some went from living comfortably to barely surviving on government assistance.
She's fortunate that relatives didn't abandon her. "I have family who stayed by me and knew I was not a lazy person," she explains. "I loved to work for nonprofits and make money for them. Then it just socked me."
Friends couldn't understand why she was too tired to call or talk when they made the effort. And so many lost touch.
Dinner outings easily wipe her out. "Getting dressed saps my energy," Gamble says. "So I get undressed, my husband calls and we cancel."
She copes with allergies, an underactive thyroid and fibromyalgia, which is common among CFS patients and causes widespread pain.
Too often, people mistakenly believe a good night's rest will help. Unfortunately, she says, "sleep is not refreshing."
A contemporary fiction enthusiast, she used to read two books a week. "I haven't read a book since I got sick," she says. "I can barely read two paragraphs of a newspaper article. I get burned out mentally."
Around the onset of her illness, Gamble planned to "go on with my life," she recalls. "I didn't know anything about CFS in 1990."
Prescription medications lessened muscle aches and sleep problems. But no alternative medicine remedies provided any relief. Not acupuncture. Not Chinese herbs.
Gamble also tried intravenous vitamins, a low-fat diet and Kutapressin injections to rev up the immune system. She traveled to Belgium to consult a doctor she had met at a CFS conference.
Hope and humor help. "I have scoured around far and wide to find something," she explains. "After a while, you say, 'I'll try anything because I want to get better.'"
Combination of treatments
Turning to various health-care providers with different expertise may be beneficial.
"If you had cancer or multiple sclerosis, there are places for comprehensive treatment," says psychologist Leonard Jason, a chronic fatigue syndrome researcher at DePaul University in Chicago. But such centers don't exist for CFS. "Each patient is going to have to put together their team," Jason suggests. The group should include a medical doctor and perhaps a physical therapist, nutritionist and alternative medicine practitioner, depending on the patient's symptoms.
For some CFS sufferers, Kutapressin complex injections and Immunoprop capsules help boost the immune system. Dr. Derek Enlander has observed that the combined treatment works for 70% of his patients.
A holistic approach is worth trying. "You use a combination of medicines, nutrients and mind-body techniques," says Dr. Richard Podell. This concept relies on the "body's natural healing systems," such as energy production, sleep and digestion.
"CFS patients must contend with a host of challenges. Prior to onset of symptoms, most of my patients were highly accomplished, once stars in their fields, with rich social and intimate relationships," explains Ruth Livingston, a midtown psychologist who counsels people with chronic conditions.
"It's the loss of professional and social identity, the sense of hopelessness and depression that usually drives one into psychotherapy."
Diagnosis and symptoms
Evaluation begins with a detailed medical history, examination and blood and urine tests. Because there's no specific blood test for CFS, the diagnosis is made by excluding other illnesses and comparing symptoms to accepted criteria.
Doctors refer to a definition developed under the guidance of the Centers for Disease Control and Prevention. It was published in Annals of Internal Medicine in 1988.
More information
American Association for Chronic Fatigue Syndrome: www.aacfs.org
CFIDS Association of America: www.cfids.org
National CFIDS Foundation: www.ncf-net.org
National Center for Infectious Diseases, www.cdc.gov/ncidod/diseases/cfs/info.htm
National Institute of Allergy and Infectious Diseases: www.niaid.nih.gov/factsheets/cfs.htm
Thanks to New York Daily News; Originally published on August 10, 2005
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