A GUIDE FOR PHYSICIANS WHEN CONSIDERING A DIAGNOSIS OF CHRONIC FATIGUE SYNDROME IN CHILDREN

Chronic Fatigue Syndrome is an illness defined by its clinical parameters and includes both patient symptoms and physical exam findings. A working definition based primarily on the findings in adults is being tested nationally at several levels. These studies are evaluating both the accuracy of the definition and the number of patients who fulfill it. Other studies are searching for laboratory and physiologic markers of the syndrome.

When evaluating patients with chronic fatigue of unknown origin, physicians can use the following definition of CFS as a guide. This detailed definition was developed for research use under the leadership of the Centers for Disease Control and Prevention. It was published in the ANNALS OF INTERNAL MEDICINE in March 1988. Because the disease is still poorly understood, however, the outlined criteria should be considered provisional. The definition is as follows:

I. New onset of persistent or relapsing fatigue, with at least 50% reduction of activity level for at least 6 months.

II. Exclusion of other conditions through History, Physical Examination and Laboratory Examination.

III. 6 of the following 11 symptoms:

  1. Mild fever
  2. Sore throat
  3. Painful lymph nodes
  4. Muscle weakness
  5. Muscle pain
  6. Prolonged fatigue after exercise
  7. Headaches
  8. Joint pain
  9. Neuropsychologic complaints
  10. Sleep disturbance
  11. Acute onset of symptoms

And 2 of 3 signs on physical examination:

  1. Low grade fever
  2. Throat inflammation
  3. Palpable or tender lymph nodes

IV. Or 8 of the 11 symptoms without physical signs.

As suggested by the above statements the origins and boundaries of the syndrome are still unclear. Illnesses that are consistent with CFS definitely occur in adults and adolescents. Whether or not the syndrome occurs as a readily recognizable illness in younger children is still an open question.

Fatigue is a nebulous concept. It can be considered good or bad. Good fatigue follows successful work or play and resolves within a finite period of time. Bad fatigue may or may not have a predisposing event, and it may persist for unexpected periods of time. If it lasts for excessive periods, it might be considered as being chronic. If the chronic fatigue prevents the person from normal work or play, it becomes a liability and medical advice may be sought. The health care provider then attempts to identify a specific or more frequently a generic reason for the patient's complaint(s). Since fatigue is present in a wide variety of diseases, the health care giver tries to shorten the list by asking questions that may lead to a diagnosis or to the performance of confirmatory laboratory tests. More often than not, the answers to the questions or the description of the patient's other complaints are the key factors in establishing a diagnosis.

This latter statement is critical when it comes to the concept of the chronic fatigue syndrome. It is much more than at least six months of fatigue and a decrease of 50 percent or more in activity. The syndrome or pattern of symptoms and signs (findings on physical exam) includes much more. The other complaints include those that are typical of infectious or inflammatory illnesses, such as: headache, sore throat, lymph node pain, muscle and joint aches, inability to concentrate, trouble sleeping and mood changes. Physicians exposed to such complaints, if supported by fever, cough or diarrhea and abnormal laboratory findings, usually have no trouble in reaching a diagnosis. If the symptom list is more lengthy (or perhaps somewhat vague) and the physical and laboratory examinations are normal, the care giver may then consider CFS as a diagnosis. Although not required as a component of the working definition, a typical case frequently begins following a "flu-like" illness or mononucleosis. Even more frequently, the exact origin of the episode is unknown. The course of the acute illness may be as expected, but the child or adolescent doesn't regain his or her usual pre-illness level of activity. CFS, at this time, however, should never be considered as a primary diagnosis, especially in younger children, since there are many reasons for such a course.

AGES 6 TO 12

Chronic or persistent illnesses obviously occur in children in this age group, but the pattern of signs and symptoms that constitute CFS, is very rare. The syndrome should only be considered if a prudent, yet thorough evaluation has been performed. Adherence to the working definition may be impossible because of the style of communication used by young children in particular. Published experience in this age group is meager at best. Some of the reports follow widely reportd "epidemics" of the syndrome. Since the syndrome remains to be precisely defined, such epidemics need to be considered as unique events at this time. Even if considered, CFS in this age group should only be an interim diagnosis, and not a definitive diagnosis until research clearly defines the role of CFS in children. The great risk of doing the latter is failure to recognize a condition that responds to specific treatment. The syndrome may be synonymous with the post-infection fatigue syndrome if it follows an acute infection and the return to normal activity follows a week or more of extra rest. If school absenteeism is prolonged for months and the child doesn't participate in usual activities even on weekends, potential causes should not be overlooked. This statement doesn't mean performing all tests known to mankind nor visiting a large number of varied health care givers; it means prudently working with the care givers who either know the family best or who listen to the child's problems and provide supportive care while pursuing the origin of the problem.

AGES 12 TO 18

Adolescents are more like adults in terms of symptoms and consequences of the symptom complex than are the younger children. This statement should come as no surprise to most readers. The challenge to care givers (health professionals and parents) is to differentiate CFS from illnesses that simply occur during this time from those that virtually only occur at this time of great change in the life. The latter may be considered to include school avoidance, stress due to peer or personal pressure, depression and living within a dysfunctional family. Studies of CFS or similar clinical illnesses such as fibromyalgia, suggest that resolution of symptoms is to be expected. The time of resolution, however, is not readily predicted. As in the younger child, CFS should continue to be only a working diagnosis, and intervention should be directed at resumption of as "normal" a life as possible. Involvement of the school and patient's peers is often necessary. Acquisition of coping skills for independent living is particularly important in the older teenagers.

In any age group, treatment is restricted to education, continuing a reasonable search for underlying illness, medication for symptom relief, attainment of coping skills and low levels of exercise. Information and coping skills are required for the family, friends and the school as much as for the patient.


Information for this text is from the brochure, "A Guide For Physicians When Considering a Diagnosis of Chronic Fatigue Syndrome in Children," authored by:

James F. Jones, M.D., Staff Physician
Department of Pediatrics - National Jewish Center for Immunology & Respiratory Medicine
1400 Jackson St., Denver, CO 80204

Material for this text compiled by:

National Chronic Fatigue Syndrome and Fibromyalgia Association
P.O. Box 18426
Kansas City, MO, USA 64133
(816) 313-2000

(Text may be reproduced and/or distributed provided sources are credited.)

Web page design by Bill Jackson, 1996.

Any comments? Send them to Bill Jackson at cfsdays@yahoo.com

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