Imagine coming down with a bad case of the flu - the kind where your whole body aches and it's hard to think straight -- and that the flu NEVER GOES AWAY. That's how many people describe what it feels like to live with Chronic Fatigue Syndrome. Guests include author Laura Hillenbrand, explaining why she had to write part of her bestseller, Seabiscuit, with her eyes closed; Dr. Nancy Klimas, professor of medicine and director of the Chronic Fatigue Syndrome research center at the University of Miami School of Medicine; Dr. Gudrun Lange, a neuropsychologist at the University of Medicine and Dentistry of New Jersey; Kim Kenney, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America; and singer-songwriter Janis Ian, performing a song that she wrote months after her diagnosis with chronic fatigue syndrome. Plus, Marlene Sanders reports on why some patients and advocates think the name of this illness should be changed. Her report includes interviews with filmmaker Kim Snyder, psychologist Dr. Leonard Jason, and Dr. Anthony Komaroff. And commentary by John Hockenberry.
In an introductory essay, host Dr. Fred Goodwin says that evidence that chronic fatigue syndrome is a whole body illness hasn't laid to rest perceptions that it's somehow not "serious." One devastating example of such dismissive attitudes can be found in the lack of appropriate disability coverage. There is a bias against illnesses that lack a single diagnostic test, and chronic fatigue syndrome is such an illness. But this bias is based on the fantasy that diagnosis is a simple matter of reading lab tests, says Dr. Goodwin. It's also very unevenly applied. Asthma and Alzheimer's disease lack diagnostic tests but few people treat these conditions dismissively. Advocates sometimes emphasize the physical components to chronic fatigue syndrome. Dr. Goodwin suggests this may be in response to the bias that mental illnesses are not as real as physical illnesses. Dr. Goodwin points out that depression also has strong physical components. The classification of illnesses as physical or mental is artificial, he suggests. "It's up to all of us to fight stigma together," he concludes.
Then Dr. Goodwin interviews author Laura Hillenbrand, who wrote her first book, Seabiscuit, while struggling with chronic fatigue syndrome. Seabiscuit, the book's eponymous protagonist, was a champion race horse. In 1938 he was the subject of more American newsprint than any other newsmaker, including Hitler, Roosevelt, and Babe Ruth. The book came out to critical acclaim and rose to a number one spot on the New York Times bestseller list. Hillenbrand says she was drawn to Seabiscuit's story in part because she empathized with him and his jockey. The horse was considered an underdog. Seabiscuit's jockey, Red Pollard, was blind in one eye. "He was not physically suited to his work," says Hillenbrand, "and I have an illness that makes it hard for me to write." She came down with chronic fatigue syndrome while still in college and went to many doctors before getting diagnosed. Suffering from severe vertigo, she had to write parts of Seabiscuit while lying flat on her back, with her eyes shut.
To learn more about Laura Hillenbrand and her book, visit the web site Seabiscuitonline. To contact Ms. Hillenbrand, write to her in care of her publisher, Random House, at 1540 Broadway, New York, NY 10036. To order the book Seabiscuit, click here.
Next, Dr. Goodwin is joined by several experts in the field of chronic fatigue syndrome. Dr. Nancy Klimas is professor of medicine and director of the Chronic Fatigue Syndrome research center at the University of Miami School of Medicine. Dr. Gudrun Lange is a neuropsychologist at the University of Medicine and Dentistry of New Jersey. She uses brain imaging techniques to learn more about cognitive problems that are associated with chronic fatigue syndrome. Kim Kenney is president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America. The Infinite Mind also put out the word to advocacy groups, and the conversation includes callers who have chronic fatigue syndrome.
People with chronic fatigue syndrome have malfunctioning chemical mediators, says Dr. Klimas. Hormones, neuropeptides, the immune system, and the autonomic system are all off balance. Sleep is profoundly disturbed. People with this illness are unable to reach the deep sleep that is restorative sleep. Some of the patients that Dr. Klimas sees can only sit upright for a few hours a day. A few hold down jobs but have a tough time doing it. She points out that the patients who reach her clinic may not be representative of the entire spectrum of people with this illness.
Studies indicate that there are between 500,000 and 800,000 Americans living with chronic fatigue syndrome but only 15 percent of them have been diagnosed. About 85 percent of people with chronic fatigue syndrome experience cognitive dysfunction, says Dr. Gudrun Lange. This dysfunction, sometimes called "brain fog," involves problems with short-term memory. A caller from Atlanta asks about the brain's involvement in chronic fatigue syndrome and Dr. Lange refers to her research, which has found that the brains of people with chronic fatigue syndrome typically display small lesions, especially in the forebrain.
Dr. Klimas compares what scientists are learning about chronic fatigue syndrome to an old fable about blind men trying to understand the nature of an elephant. One grabs hold of the trunk and concludes that the elephant is like a snake. Another grabs hold of a leg and says no, an elephant is like a tree. Researchers in chronic fatigue syndrome tend to see this multifaceted illness in terms of their own specialties, says Dr. Klimas. Immunologists see chronic fatigue syndrome as an immune dysfunction. Endocrinologists see the role of hormones as primary. Specialists in the autonomic system say it all has to do with blood pressure. "The truth is, it's all of them," she says. A current theory about the possible role of viruses in chronic fatigue syndrome holds that the illness may begin when a virus that has lain dormant in the body for many years is reactivated. Current research is focusing on a virus called HHV-6, which causes measles in childhood.
A caller, Sarah, says she has had chronic fatigue syndrome since she was twelve years old. She says she's in college now but it took her an extra year to graduate from high school and she had to switch to a school that didn't have classes during the day. Sarah asks if there have been any breakthroughs in understanding pediatric cases of chronic fatigue syndrome. Not yet, says Kim Kenney. Treatment for chronic fatigue syndrome focuses on treating symptoms, says Dr. Klimas, especially problems with sleeping and pain. Cognitive behavioral therapy can help patients adapt their lives to the reality of their illness, and often involves teaching patients to work towards small, achievable goals. Sarah's a good example, she says, of someone who has found ways to accomplish her goals at a pace that's in keeping with her illness.
To learn more about or to contact Kim Kenney or the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, visit the web site for CFIDS.org.. Or write to The CFIDS Association of America, Inc. PO Box 220398 Charlotte, NC 28222-0398
To learn more about Dr. Gudrun Lange or to contact her, visit this web site. Or write to UMDNJ-New Jersey Medical School, F1557, Behavioral Health Sciences Building, 183 South Orange Avenue, Newark, NJ 07103.
To learn more about or to contact Dr. Nancy Klimas visit this web site. Or write to her at VA Medical Center, 1201 Northwest 16th Street (111-I), Miami, FLA 33135.
Then, The Infinite Mind's Emily Fisher interviews singer-songwriter Janis Ian. Her most recent CD is God and the FBI. Janis Ian's songs have been recorded by everyone from Stan Getz to Bette Midler, from Glen Campbell to Vanilla Fudge, from Cher to Joan Baez to Etta James. To date, she's won nine Grammys. In 1988 she came down with a sore throat that didn't go away. She thought she had a weird flu. Months later she was diagnosed with chronic fatigue syndrome. At first, she was bedridden. Her short-term memory was severely impaired, she says. When she could leave the house, she would forget to put her jacket on - in the middle of December. She says a low point was collapsing outside of a supermarket, unable to remember if she had driven there or walked there or was waiting to be picked up by someone. Today she's in remission. She urges people with chronic fatigue syndrome to hold onto a sense of hope. In the first months of her illness she wrote a song, "Days Like These," which she performs, and which speaks to the need for hope. It concludes, "When the one thing left/ is the blessing of my dreams/ I can make my peace/ with days like these."
To learn more about Janis Ian, check her touring schedule, or to contact her, visit her web site, JanisIan.com. To order God and the FBI or other Janis Ian CDs, click here.
Next, what's in a name? When it comes to the name "chronic fatigue syndrome," some advocates say it's time for a new one. Veteran reporter Marlene Sanders - winner of three Emmys and the first woman to anchor a nightly network newscast - has the report. It begins with a clip from filmmaker Kim Snyder's documentary I Remember Me. Patients with chronic fatigue syndrome say the name of their illness sounds trivial. Kim Snyder, who also has the illness, agrees. "Fatigue is such a misnomer for what I was experiencing. I basically felt like I was dying." Doctors at the Centers for Disease Control came up with the name in 1988. Psychologist Dr. Leonard Jason, at DePaul University, is part of a group that's looking at the problem with the name. Dr. Jason's research shows that college students and health care professionals, presented with identical symptoms and case studies, will form negative attributions for the person labeled with "chronic fatigue syndrome" rather than a more "medical sounding" term. His group is suggesting that chronic fatigue syndrome be renamed "Neuroendocrine Immune Dysfunction Syndrome." Dr. Anthony Komaroff, professor of medicine at Harvard University, agrees that the name "chronic fatigue syndrome" is "a terrible name," but says it's too early to change it. A name change should be based on a broad consensus about the disease's underlying mechanisms, says Komaroff, and that consensus just isn't there yet.
To contact Dr. Leonard Jason by email or learn more about his work at DePaul University, visit this web site. To write to him, write care of Leonard A. Jason, Ph.D. DePaul University Center for Community Research 990 W. Fullerton Ave. Chicago, IL 60614-3504.
To contact Dr.Anthony Komaroff, write to Harvard Medical School 10 Shattuck St, Countway Library Suite 602, Boston, MA 02115.
To learn more about Kim Snyder and her documentary, I Remember Me, visit the documentary's web site at Zeitgeist Films. To contact Ms. Snyder, write to her care of Zeitgeist Films, 247 Centre Street, New York, NY 10013.
The profound exhaustion of Chronic Fatigue Syndrome is a symptom of an underlying disorder, but more run of the mill tiredness may be important to take seriously too. We often hear crises described as "a wake up call." Could everyday tiredness be a "time to go to sleep call?" Next, John Hockenberry on the exhaustion that passes for "normal" in the life of the busy parent.
Additional sources for learning more about chronic fatigue syndrome include:
Centers for Disease Control. Visit this web site at the Centers for Disease Control. Or write to Centers for Disease Control and Prevention 1600 Clifton Rd. Atlanta, GA 30333 U.S.A
The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America. Visit the web site for CFIDS.org.. Or write to The CFIDS Association of America, Inc. PO Box 220398 Charlotte, NC 28222-0398
The National Chronic Fatigue Immune Dysfunction Foundation. Visit this web site for the CFIDS Foundation. Or write to The National CFIDS Foundation 103 Aletha Rd, Needham Ma 02492
- Emily Fisher
