Even though thousands of Americans have been found to have chronic fatigue syndrome since the disorder was officially recognized in 1988, experts still cannot agree on what CFS is or how it’s caused.
The disparity of opinion was on prominent display here Saturday at the annual meeting of the American Psychological Assn. during a debate on the question: Is CFS a mind or body illness?
After two hours of discussion, a panel of internists, psychiatrists and psychologists--most of whom have either conducted major research projects or written books on the disorder--could only grudgingly agree that the disorder, whatever its cause, clearly affects the brain, leaving patients depressed, tired and confused.
How that fragile consensus could ultimately help CFS patients, however, remains to be seen.
“When CFS was first recognized in the 1980s, there was a media frenzy over: Is it biological or psychological?” said Fred Friedberg, a psychologist at State University of New York, Stony Brook. “The media frenzy has died down. But we still wonder how we should view CFS: as an illness of the mind or an illness of the body?”
Not having an answer to that question, he says, “means many CFS patients have had to try to convince their doctors that they were really ill.”
That patients have suffered from the lack of professional unanimity is a point most experts agree on.
“This is not a benign debate,” said Dr. Martin J. Arron of Northwestern University in Evanston, Ill. “Whether we view this as an organic or a psychiatric disorder affects the treatment people will get.”
Even estimates on how many people have CFS vary widely, from a conservative guess of seven per 100,000 people to 200 per 100,000, said DePaul University psychologist Leonard A. Jason. But, he added, the definition of CFS is so vague that various surveys will inevitably produce different findings. The U.S. Centers for Disease Control and Prevention have defined chronic fatigue syndrome as the presence of at least four of eight specific symptoms--such as headaches, sore throat, muscle ache and fatigue after exertion. The duration must be for at least six months.
There is no diagnostic test, such as a blood test, for CFS.
“There are a lot of ambiguity and reliability problems in this definition,” Jason said. “Many of these symptoms, such as fatigue and sore throat, are not unusual for people to have. It’s a question of intensity.”
This vague-at-best definition of CFS, however, has been used over the past decade to produce scores of studies. And both sides of the mind-body debate claim ample evidence to support their position.
For example, the well-known Harvard internist Dr. Anthony L. Komaroff argues that CFS is a biologically based illness.
“I think there is abundant evidence of biological abnormalities underlying this disease,” Komaroff said at the debate. “There is good evidence that the illness can be triggered by well-documented infectious agents” such as the Epstein-Barr virus or herpes 6 virus. But, he added, “It’s probably not a single infectious agent” causing all CFS cases.
More evidence that CFS is biological, Komaroff said, includes: the sudden onset of a flu-like illness and the failure of depressed CFS patients to respond to antidepressants. In addition, studies have detected immune system abnormalities in which the body appears to be “turned on” as if to fight an infection even though there is no direct evidence an infection exists, he said.
But proponents of the psychiatric basis for CFS argue that people with obvious psychological distress, such as bereaved individuals, have also been shown in studies to have immune system abnormalities. And, they add, the high prevalence of depression among CFS patients suggests a strong emotional component to the disorder.
Moreover, “consistent personality abnormalities” are seen in many CFS patients, including such traits as hostility and pessimism, said Dr. Peter Manu of Hillside Hospital in Glen Oaks, N.Y.
“We have a very reasonable quantity of evidence that shows tremendously high levels of depression and a high incidence of personality abnormalities,” he said.
But Komaroff argues that surveys show only about half of CFS patients are depressed and that many of those become depressed only after being ill for a long time. Studies also show that antidepressants often fail in CFS treatment.
“In many patients, one cannot find any evidence of psychiatric disorders,” he said. “There is not a clear or consistent relationship with a psychiatric disorder.”
That’s because doctors have not looked hard enough at different kinds of psychiatric conditions that may be at the root of CFS, said Manu. He agrees that antidepressants are often ineffective in chronic fatigue syndrome. But other psychiatric illnesses, such as bipolar depression (depression which alternates with periods of mania) and schizophrenia need to be explored along with other psychopharmacological medications such as lithium and anticonvulsants.
“There are people who are now labeling CFS as a . . . variant of bipolar disorder,” Manu said. “I’m optimistic that in the next five years these new contributions will offer a framework for therapeutic interventions.”
Both sides of the debate agree that only one therapy seems to help many CFS patients. Cognitive behavior therapy, which teaches patients how to cope with their symptoms and eventually regain a normal level of functioning, has been the most successful approach.
While this success is used as evidence by those who believe CFS is a psychiatric condition, Komaroff says it proves nothing. Cognitive behavior therapy is helpful to people with other kinds of chronic, physical illness, such as lupus and multiple sclerosis, he said.
“What this form of therapy shows patients is that they can learn to function better than they thought they could,” Komaroff said. “I don’t think that means [the illness] is a psychiatric condition.”
Still, while so many questions remain unresolved, patients might benefit the most if doctors would focus on trying to relieve their symptoms without pinning an explanation on the illness, Jason said.
“If these patients go to a physician and are referred to a psychiatrist who tells them, ‘It’s all in your head,’ ultimately what these patients feel is the trauma of thinking they have something physical and the trauma of having a physician tell them it’s not a real illness,” he said.
And because CFS is known to produce various symptoms in different people, a single cause-and-effect theory seems implausible, said John DeLuca, a psychologist at the Kessler Institute for Rehabilitation in Rockaway, N.J.
“Even if two people have CFS, it doesn’t mean Individual A and Individual B have the same thing. The heterogeneity is a major problem,” he said.
And that is a good enough reason to steer clear of sweeping hypotheses about the nature of CFS--at least for now, DeLuca said.
“This mind-body debate is inadequate. Until we’re able to break away from this distinction, we can’t really help people,” he said.
Komaroff, while adhering to a biological basis for CFS, agrees that the two sides of the CFS debate need to move together.
“I think the mind-body duality is probably a destructive way of viewing any illness,” he said. “I think there is abundant evidence of biological abnormalities underlying the disease. But I agree there is a high degree of concomitant psychiatric components. There is something going on in the brains of these patients. What you call it is inconsequential.”