TOPICS

COLUMNS

LISTINGS

2001 LISTINGS

HELP

PARTNER LINKS

HEALTH

Puzzling malaise: Unlocking the clues

With no definitive diagnosis or treatment, physicians and their patients look to researchers for some answers to chronic fatigue syndrome.

By Susan J. Landers, amednews staff. July 23, 2001.

Christine Petty, MD, a family physician in Rockford, Ill., treated a patient for an illness that lasted six years. During that time, the man, then in his 40s, became so disabled he couldn't leave his home. He took a leave of absence from his job. His wife divorced him. Although his condition ultimately improved, his life was nearly destroyed.

Dr. Petty's patient had chronic fatigue syndrome, an illness that is often as devastating as it is puzzling and one for which there are more questions than answers.

A 19th-century puzzle
Diagnosing CFS
Resources

Estimates of those with the illness have reached 800,000 in this country alone, according to recent research. But pinpointing its exact symptoms can be as perplexing as CFS itself.

Fatigue is a common complaint. But in the case of this patient, Dr. Petty could pick up signs that his difficulties were different. This patient's fatigue was both bone-crushing and unexplained. He also complained for at least six months of a host of other ills: low-grade fever, muscle aches, sore throat and sleep problems.

While there is a definition for CFS that was developed in 1994 and used by Dr. Petty in her diagnosis, most researchers and clinicians find it flawed. A new one is in the works. It is expected to be ready by 2003.

There is no definitive way to identify CFS. "It's mainly a diagnosis of exclusion," said Dr. Petty. Physicians must first rule out viral causes and cancer. So blood work and a thorough physical exam and good medical history are the first steps to take, she explained.

800,000 Americans, across all ethnic groups, suffer from chronic fatigue syndrome.

The Centers for Disease Control and Prevention recommends a series of about 15 tests physicians can use to screen for CFS. They include a complete blood count, measures of total protein in blood plasma as well as glucose levels.

Unusual findings in any of the tests could point to a disorder that a physician may successfully diagnose and treat.

However, 90% of CFS patients will test at normal levels, according to the CDC.

Treatment concerns

After ruling out all other diseases, doctors should consider CFS. But, as with the diagnosis of the illness, there is no definitive treatment.

For Dr. Petty, treatment included providing a lot of support for her patient. Sometimes antidepressants are prescribed, particularly tricyclics to help patients gain more restful sleep.

Holistic management of patients' lives can also be a central element of care, said Dr. Petty. Eating right, getting adequate rest, moderate exercise, controlling stress and maintaining social ties are important considerations, she notes.

Cognitive behavioral therapy in skilled hands may also be included in treatment, according to Anthony Komaroff, MD, professor of medicine at Harvard Medical School.

A commonsense clinical approach is best, said William Reeves, MD, principal investigator of CDC's chronic fatigue syndrome program.

Dr. Petty noted that she doesn't do much referring unless it's to a social worker or a massage therapist. "I don't find infectious disease specialists are particularly helpful with the diagnosis," she said.

The Dept. of Health and Human Services' newly formed Chronic Fatigue Syndrome Coordinating Committee identified primary care physicians as those most likely to care for patients with chronic illnesses such as CFS.

Needless to say, diagnosing and treating a complex case of CFS can consume an inordinate amount of a physician's time, an item in short supply in the current managed care era. CFS also poses a quandary in a medical climate that emphasizes a scientific basis for prevention, diagnosis and treatment.

"While it is pretty clear there are objective, biological things wrong with many patients," said Dr. Komaroff, "the problem is that none has been found to be present in every patient. So we don't yet have the two things that the average doctor and patient are looking for -- a diagnostic test that is sufficiently accurate to be useful and a proven treatment."

As a result, patients with the syndrome must often endure the skepticism of family and friends and even some physicians. Patients and their advocacy groups have become vocal defenders of the physiological basis, even if unknown, of CFS.

Arthur Barsky, MD, a psychiatrist at Brigham and Women's Hospital in Boston, received a rash of angry letters after he and a colleague published a study suggesting that the responses of physicians and others to the diagnosis of a controversial illness such as CFS could cause patients to exaggerate and maintain their symptoms.

Most letter-writers assumed Dr. Barksy was saying the illness was more a state of mind.

But Dr. Barsky wasn't really surprised by the responses to the study published in the June 1999 issue of the Annals of Internal Medicine. "There is a great deal of heat around the status of all these syndromes," he said. "Obviously there are a lot of advocacy groups, and a lot of people feel strongly about whether they are 'real' diseases or not."

And attitudes in general also seem to be changing, according to Dr. Komaroff. He said there is much less skepticism among physicians now than there was a decade ago, before research evidence began to roll in.

Nonetheless, treating patients with CFS might not be every physician's cup of tea, noted Dr. Reeves. Patients with CFS are often very articulate, they don't look sick and they have a lot of complaints, he said. Common complaints and symptoms of patients are often cognitive, so a physician may have a patient who just can't stay on track. "These are hard patients to deal with," he said.

Physicians also need to be wary that they don't attribute all a patient's complaints to CFS. "Women with CFS can get breast cancer just as well as those without," Dr. Reeves said.

If a diagnosis of CFS in adults is controversial, CFS in children is even more so, with many physicians and others questioning whether it exists in children and teens.

David Bell, MD, a pediatrician in Lyndonville, N.Y., is a believer. He was drawn to the issue when a cluster of about 50 cases of CFS occurred in 1985 among children in his rural area of the state, halfway between Buffalo and Rochester. CFS is a diagnosis that physicians often miss in children, he said. And this is a big problem.

Dr. Bell goes about diagnosing the illness a bit differently than do many other physicians. "I disagree that you should rule out every other disease and then you're left with CFS," he said.

"The pattern of fatigue and activity limitation is a little different from other illnesses that cause fatigue," Dr. Bell said. "Associated symptoms of cognitive problems, muscle and joint pain and sore throat and lymph node pain and sleep disturbances make this a unique illness."

The average age of onset was 11 to 12 among a group of children in a study published by Dr. Bell in the May, 2001, issue of Pediatrics.

He reported that 80% of the children made a good recovery. Most took three to four years to recover with nine years being the longest period of recovery. But the remaining 20% of the children are still quite affected, he said.

Many children are unable to go to school because of the severity of their illness, he said, and one of the most important aspects of care is to make sure their education is provided for.

Although schools are required by federal law to accommodate these children, physicians must first make a clear diagnosis of CFS, he said.

Researchers gear up

The pursuit of a cause and proper treatment for CFS is heating up with a new emphasis by HHS on research. "We are trying to reinvigorate the field now because there are so many new methods for doing genetic analyses and studying the brain," said Eleanor Hanna, PhD, a senior adviser at NIH's Office of Research on Women's Health, which is coordinating the departmentwide CFS initiative.

A new request for research proposals is scheduled to be released shortly, Dr. Hanna said.

Research needs were mapped out during a State of the Science Conference on CFS held last fall in Arlington, Va. The event was sponsored by several of the NIH institutes and offices as well as the CDC.

Participants, including a patient, a community physician and researchers, cited the need for longitudinal studies, studies designed for specific subgroups of patients and on the physiology of pain and sleep disturbances, to name only a few.

Researchers are already using imaging technology to measure brain hormones and are examining the functioning of the immune system. "There is considerable evidence already that the immune system is in a state of chronic activation in many patients with CFS," Dr. Komaroff said.

The CDC will soon begin a national survey to determine prevalence rates. "We will be particularly interested in ethnic minorities and will be looking at adolescents," Dr. Reeves said.

Recent research findings by Leonard A. Jason, PhD, psychology professor at DePaul University in Chicago, threw into question a long-held belief that CFS is most common among white women. His survey of nearly 29,000 Chicago residents found that the illness occurred across all ethnic groups. "Latinos had rates almost twice as high as Caucasians, and African Americans had rates similar to Caucasians," Dr. Jason said.

The search for specific infectious agents that may trigger or perpetuate symptoms of the illness is also ongoing, Dr. Komaroff said. "Although it is still unproven that any infectious agent is the cause of CFS, a number of us think that is a very plausible possibility in many if not all patients."

But when the dust finally clears around CFS, few researchers believe a single, infectious agent will be found to explain all the cases, Dr. Komaroff said.

And many believe that a variety of poorly understood syndromes ranging from CFS to Gulf War syndrome to fibromyalgia and multiple chemical sensitivity may turn out to be one and the same illness.

Another theory is that CFS will turn out to be similar to cancer or heart disease in which a comprehensive term covers many varieties.

"I think what we will eventually find is that there are different pathways and different subtypes, some that have immunological problems and some that have no immunological problems and some with other problems," Dr. Jason said.

ADDITIONAL INFORMATION:

A 19th-century puzzle

More than 100 years ago, physicians were seeing patients who complained of a condition that mirrors chronic fatigue syndrome. It was called neurasthenia or nervous exhaustion.
In the 1877 essay Fat and Blood: An Essay on the Treatment of Certain Forms of Neurasthenia and Hysteria, Dr. Silas Weir Mitchell said of a patient: "Everything wearies her -- to sew, to write, to read, to walk -- and by and by the sofa or the bed is her only comfort. Every effort is paid for dearly, and she describes herself as aching and sore."
In 1869, Dr. George Miller Beard wrote in the Boston Medical and Surgical Journal: "The diagnosis of the neurasthenic condition is sometimes entirely clear, and again is quite difficult. The diagnosis is obtained partly by the positive symptoms, and partly by exclusion."

Diagnosing CFS

A patient is classified as having CFS if he or she meets the following two criteria:

1. Unexplained fatigue that is not due to ongoing exertion, is not relieved by rest and results in a substantial reduction in previous levels of activity.
2. Four or more of the following symptoms are concurrently present for six months or more: