With CFIDS, Behavioral Therapy Often Adds Insult to Injury

by Leah Thayer

It was a decade after Pat Fero exhibited initial symptoms of chronic fatigue and immune dysfunction syndrome (CFIDS) before the government launched its first major study of the illness. Another decade passed before the media took much of an interest. Unfortunately, according to Fero, the attention that has followed addresses this most complex of illnesses in the most simplistic of terms, too often concluding that CFIDS can be cured through exercise and positive thinking. That attitude prevails today even among many clinicians and scientists, further diminishing the chances of both the disease getting adequate research funding and the people who have it—most of them women— getting informed medical care.

CFIDS, which the government calls chronic fatigue syndrome (CFS), is a debilitating disease marked by symptoms including extreme physical and mental fatigue, headaches, sleep disorders, severe concentration difficulties, muscle pain and more. Estimates vary as to its prevalence. The U.S. Centers for Disease Control and Prevention (CDC) says as many as 500,000 people in the U.S. have a "CFS-like condition." In a 1999 study published in the Archives of Internal Medicine, researchers at DePaul University estimated its incidence at 422 per 100,000 people, or up to 800,000 people nationwide.¹ But even that number may be low, says Fero, today executive director of the Wisconsin Chronic Fatigue Syndrome Association Inc., as it excludes those younger than 18 or older than 69. Diagnosing CFIDS is difficult because it may have the same symptoms of other diseases, and there is no specific laboratory test for it. There is also no proven treatment.

Like multiple sclerosis, fibromyalgia and other autoimmune disorders, CFIDS primarily affects women. Three women have it for every man, according to the DePaul study. It is also similar to other traditionally women's afflictions in bearing a name that many feel trivializes the seriousness of the illness. Until a few decades ago, for instance, the term for multiple sclerosis was "hysterical paralysis." The term CFS emphasizes fatigue— and who isn't tired at times? Claiming that CFIDS is about fatigue "is like saying diabetes is chronic peeing syndrome," says Fero.

Misleading Numbers

No two CFIDS cases are the same, but Fero's story is similar to others in its gradual progression and long road to diagnosis. In 1980, after returning from a trip overseas, Fero came down with a high fever, chills, headaches and neck stiffness. The symptoms came and went, worsening the next year during an "awful pregnancy," then progressing to the form of "mind-numbing exhaustion," episodes of dizziness and viral symptoms such as weekly outbreaks of cold sores. In 1986, she read about an organization in Oregon—the first for the still-unnamed disease—that indirectly put her in touch with the Wisconsin organization she runs today.

Four years after that, in 1990, the CDC announced plans to launch a study of CFS, with a major goal being to confirm other experiments that showed people with the condition had immune system irregularities, and not psychiatric troubles. Although the CDC study revealed data to that effect, it unfortunately identified a population of patients that was 98 percent white and 85 percent female, with more than 80 percent having an advanced education and a third coming from upper-income families. These statistics—since disproved by evidence that CFIDS strikes all ages, races and socioeconomic groups—reinforced the views of many skeptics that CFIDS was a "yuppie flu" existing only in the minds of overachievers.

In the years that followed, frustrated or desperate CFIDS patients turned to a widening array of therapies, including cognitive behavioral therapy (CBT) and graded exercise therapy (GET). CBT, based on the theory that inaccurate beliefs, ineffective coping mechanisms and negative moods interact to perpetuate illness, attempts to teach patients to rethink the way they react to negative triggers—in effect, to calm their minds and calm their bodies. Under GET, patients begin with light exercises that gradually increase in difficulty and duration. An article in the September 2001 Journal of the American Medical Association documented some of these experiences.² Analyzing the data from 44 previous studies involving 2,801 patients, the article found (among other things) that CBT and GET have an "overall beneficial" effect on people with CFIDS. The authors noted that both therapies had high dropout rates and excluded certain populations, including people who were unable to walk or get out of bed (as many with CFIDS are). Moreover, 2,801 people is a "tiny" sample for an illness that takes as many forms as CFIDS does, says Fero. Nevertheless, the media seized on the story. Fero recalls taking her association's newsletter to the printer shortly after an article appeared in the Madison paper. "So," the printer remarked, "I hear exercise is good for that CFS."

No Easy Answers

The problem with generalizations like this isn't that CBT and GET are ineffective for people with CFIDS, says Fero. In the hands of a highly trained specialist, CBT can be "wonderfully effective for some patients, especially the newly diagnosed." Similarly, "it's common sense that the body is designed for movement." According to Fero, the problem is that the JAMA article gives license to physicians to refer out CFIDS patients for CBT or some other psychiatric fix regardless of the therapist's understanding of CFIDS—or of CBT, for that matter. CBT "is being used to dismiss patients," says Fero. "If it doesn't work, the patient can be disregarded because she isn't trying hard enough."

And disregarded many patients are. In one study, 77 percent of people with CFIDS had had negative experiences with health care providers.³ In another, 57 percent of respondents said their doctors had treated them badly or very badly.⁴ More concrete evidence of bias came in 1999, when the CFIDS Association of America discovered that between 1995 and 1998, the CDC had actually spent $12.9 million of CFIDS-earmarked funding on other, unrelated projects.⁵

What can be done? Writing in the Journal of Chronic Fatigue Syndrome, Leonard A. Jason, a clinical psychologist from DePaul University, concludes that mental health professionals should work closely with physicians in assessing and treating patients with CFIDS. "Physicians who recommend psychotherapy in the absence of other medical recommendations may be unwittingly contributing to a resulting overemphasis on psychiatric interpretations and minimization of symptom severity and disability by mental health providers .... [F]uture research and practice should focus upon educating mental health trainees and clinicians working in rehabilitation-oriented settings about the complex nature of chronic fatigue syndrome ... ."⁶ Jason is currently principal investigator of a promising study at DePaul combining medical care and one-on-one therapy.⁷

Fero agrees, noting that a systemic disorder such as CFIDS requires a "multidisciplinary, holistic approach accompanied by medical intervention and treatment of some symptoms, and not the other way around." Being told that a disabling illness began with "destructive thought patterns" helps no one. Given the slim chance of the government freeing up funding for CFIDS research any time soon, the most constructive approach may be to broaden awareness that CFS is not about fatigue, but is a disabling, neurological illness that people struggle to live with every day.

Leah Thayer is editor of the Network News. For more information on CFIDS, contact the CFIDS Association of America (704-365-2343). The Network's Information Clearinghouse also produces an information packet on CFIDS ($8 for Network members; $10 for non-members). To order, call the Clearinghouse at 202-628-7814.

References

¹ Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. "A Community-Based Study of Chronic Fatigue Syndrome." Archives of Internal Medicine 1999; 159(18): 2129-2137.

² Whiting P, Bagnall A, Sowden AJ, Cornell JE, Mulrow CD, Ramirez G. "Interventions for the Treatment and Management of Chronic Fatigue Syndrome: A Systematic Review." Journal of the American Medical Association 2001; 286(11): 1360-1368.

³ Anderson JS, Ferrans CE. "The Quality of Life of Persons with Chronic Fatigue Syndrome." Journal of Nervous and Mental Disease 1997; 185: 359-367.

⁴ David AS, Wessely S, Pelosi AJ. "Chronic Fatigue Syndrome: Signs of a New Approach." British Journal of Hospital Medicine 1991; 45: 158-163.

⁵ Gerringer K. "Facing Goliath." Association Management, American Society of Association Executives, August 2002.

⁶ Jason LA, Taylor RR. "Measuring Attributions about Chronic Fatigue Syndrome." Journal of Chronic Fatigue Syndrome 2001; 8: 3140.

⁷ Davis M. "DePaul Study Finding Therapies to Combat Drain of Chronic Fatigue." Chicago Tribune; November 17,2002.