CFS and Adolescents

By Karen Lang

Originally published in Youth Allied By CFIDS, Winter 1997

As in 1994, the American Association for Chronic Fatigue Syndrome (AACFS) made a special point of highlighting the unique aspects of pediatric CFS with a panel discussion during the clinical portion of the October 1996 conference.

David S. Bell, MD
Dr. Bell, a pediatrician who attended to many of the patients in the 1985 Lyndonville, NY CFS outbreak, presented findings from a study he conducted in collaboration with Tim Hynick, PhD on the effects of adaptive (positive) and maladaptive (negative) coping strategies. He studied the level of fatigue severity in 69 adolescents with unexplained fatigue. The study, based on a questionnaire sent to 170 patients who were between the ages of 11 and 18 when Dr. Bell first evaluated them for unexplained fatigue, did not address the effects of coping styles on overall happiness.

"We’ve always assumed [in our culture] that if you cope well, your illness will be better, [that] you can cure yourself with a positive attitude," Dr. Bell said. "We were looking for a trend that better coping styles meant less fatigue." The study did not reveal such a trend. It found no correlation between positive coping styles and reduced fatigue, or between negative coping styles and greater fatigue.

Some of the participants met the 1994 CDC definition for CFS, while others met the 1988 CDC definition. Some became ill prior to 1988, and were thereby excluded from "true" CFS diagnosis according to either of the CDC definitions. Most had at least four of the eight major symptoms that are included in the current CDC definition.

Duration of symptoms ranged from two years to greater than five years. Of the sample, 42% had been ill longer than five years, a finding that substantiates the possibility that a significant number of adolescents with CFS or CFS-like illness may experience a prolonged cycle of illness.

By age group, 40% of the participants were age 11–12; 34% were 13–14; 15% were 15–16; and 10% were 17–18. Noting that it is possible to assess whether secondary gain, or primary or family emotional disorders are involved in a child’s expression of illness, Dr. Bell reported that these factors were ruled out for all of the participants.

Measurement tools used in the study, which was funded by the Massachusetts CFIDS Association, included the Self Perception Profile for Adolescents, the Karnofsky Scale (modified), issues of social support and a coping scale with four adaptive (positive) and four maladaptive (negative) categories.

Dr. Bell illustrated the difference between positive and negative coping styles by comparing the response of two patients to the question, "How are you feeling today?" The patient who is coping well says, "Fine." The one who is not coping well says, "Terrible! I can’t do anything anymore, I’m stuck in bed most of the time and I feel awful!" Neither response, Dr. Bell noted, tells anything about the level of fatigue.

The study also looked at the relationship between coping strategies and perceived self-confidence. It found no correlation between positive coping styles and higher self-confidence, but there was some connection between negative coping styles and lower self-confidence. Additionally, there was no apparent relationship between social support and fatigue severity.

An important result of this study, Dr. Bell pointed out, is that its findings are atypical of psychiatric or psychosomatic illness and even some physical illnesses, where positive coping mechanisms have been shown to improve the patient’s condition. These findings support other evidence that CFS is not a psychiatric disorder.

Dr. Bell emphasized that the study does not imply that adaptive coping mechanisms are not useful or valuable in disease management, only that they do not seem to affect fatigue severity. He stressed the importance of assessing the patient’s coping style when determining the clinical picture, and the need to separate the coping style from the illness severity and to look at each aspect independently. With the medical and social uncertainties associated with CFS, it is important that patients understand what is happening to them with the physical symptoms of their illness. He suggested patients keep an activity diary and use the "mall test," in which the child goes to the mall with friends (a pleasurable activity) and records the effects of this outing. Both of these assessments help patients track activity levels and limitations and determine what level of activity is tolerated on a consistent basis.

James Jones, MD
Dr. Jones is a professor at the National Jewish Center for Immunology and Respiratory Medicine in Denver, CO. His presentation focused on the importance of diligent and thorough medical evaluation when working up adolescents who present with CFS-like symptoms. "Simply assuming the person has CFS may be doing him a disservice," he said. He presented a series of case histories to support his point, and wrapped up with some words of caution for his colleagues.

He began by stating, "I am going to go through the process that we as physicians have to go through when we see patients. What I’m going to present to you is the universe as we see it. The universe as we see it may not be the same universe as you all see it in terms of your experience with an adolescent with this illness in your family, or your experience with other adolescents in support groups, etc."

The first case was an adolescent who had had an infectious illness eight months earlier and was still ill. Her symptoms were consistent with CFS. The clinical evaluation, medical interview and laboratory testing failed to uncover any other physical or psychiatric disease process. She had CFS. She was advised about medical, social and school management, and she recovered over the next five months. Dr. Jones stated that fairly quick recovery (within two years) is the norm in the majority of cases of CFS in adolescents. Referring to Dr. Bell’s study in which 42% of participants remained ill longer than five years, he said, "That’s David’s universe. I don’t think that’s the universe I know."

The second case was an adolescent who presented with CFS-like symptoms of persistent fatigue and sleepiness. Following extensive evaluation, including a 24-hour sleep study, she was found to be suffering from an uncommon, yet treatable, lifelong sleep disorder called "excessive daytime sleepiness." Dr. Jones emphasized the importance of identifying and treating the specific sleep disturbance when evaluating patients with sleep problems.

The third case was an adolescent who had mononucleosis and was eight months or more into the illness. IGM antibodies, which are usually present during the early stages of an acute infection, were identified through laboratory testing. The patient was found to have active persistent infection. This is rare, Dr. Jones said, but it does occur, and physicians need to look for it.

The fourth case was an adolescent who was in training to become a professional ice skater. During her evaluation she revealed that she did not want to be a professional skater, but she felt obligated to fulfill her parents’ wishes in light of the sacrifices they had made to get her this far. The family was made aware of the issues and dealt with them, and she recovered.

The last case was an adolescent who had mononucleosis but was not recovering as expected. She began to lose weight and developed problems with food and eating. She was ultimately found to be anorexic. It was determined that there were a number of problems within the family. With appropriate medical and psychiatric interventions involving the patient and her family, the patient improved.

"CFS obviously occurs in adolescents," said Dr. Jones, usually following an infection, but timely resolution is the norm, with most adolescents recovering 80–100% over a couple of years. If this does not happen, he warned, the physician and the parents need to look for other factors. There may be other processes going on in the family that are contributing to the child’s illness. He concluded his presentation with the following "red flags" and observations for clinicians:

1. If one or both parents has a chronic illness, especially CFS, the child may be mimicking the parent’s behavior or the parent may be transferring his or her illness behavior to the child.
2. There may be psychosocial or school issues at work. Peer relationships may be problematic, resulting in school avoidance.
3. There may be parental discord, and the child may feel that if he or she remains ill the parents will not fight with each other.
4. Persistent weight loss may signal anorexia.
5. The disease process may persist for a longer period of time.
6. Periodic reevaluations may uncover previously hidden physical conditions.