Chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), is widely recognized in adults. But it is not as well known that children and adolescents can have the illness. Recognition of CFIDS in young people can be difficult because they are physically, emotionally and socially different from adults. Failure to make a proper diagnosis of pediatric CFIDS may lead to isolation, insecurity, sense of failure and family stress.

Symptoms

• The symptoms of CFIDS in children are similar to those of adults, including debilitating fatigue, impaired memory or concentration, sore throat, tender lymph nodes, muscle pain and headaches.
• The majority of children with CFIDS, particularly adolescents, have an acute onset symptoms appear suddenly within a few days or weeks, usually with a flu or mononucleosis-like illness.
• Gradual presentation occurs more often in younger, pre-adolescent children and is defined by the appearance of symptoms over several months or longer.

Diagnosis

• CFIDS is diagnosed when symptoms persist for more than six months and cannot be explained by any other medical or psychological disorders.
• Pediatric CFIDS is frequently misdiagnosed as a behavioral or emotional problem, in particular school phobia. Unlike children with school phobia, children with CFIDS are typically ill on weekends as well as during the school week.
• Many children with CFIDS also have orthostatic intolerance, which causes inability to tolerate upright posture. ^1,2

Pediatric vs. Adult CFIDS

• Children with CFIDS are more likely than adults to report symptoms such as dizziness, abdominal pain, rash, fever and chills.
• CFIDS may be more difficult to identify in children, since they often use words to describe their symptoms that are different from those used to describe adult illness.
• Neurological symptoms in particular may be overlooked because children do not have as much experience with and are less sure of their cognitive abilities.
• Long-term difficulties resulting from cognitive disorders may be more prevalent in children because symptoms in children occur during a period of rapid intellectual development.

Educational/Social Effects

• The majority of children with CFIDS (up to 94%) experience worsening of their school performance due to the physical and cognitive symptoms.³
• Twenty to 44 percent of children with CFIDS must be home-schooled because they are too ill to attend classes.⁴
• Children with CFIDS can be classified as disabled and may be entitled to educational services under the Individuals with Disabilities Education Act and/or Section 504 of the Rehabilitation Act of 1973.

Treatment

• Treatment for children with CFIDS is similar to treatment for adults, and is intended primarily to relieve specific symptoms, such as difficulty sleeping, pain, gastrointestinal difficulties, allergies and dizziness.
• Lifestyle changes, including increased rest, dietary restrictions and very light exercise, are also frequently recommended.
• Children with CFIDS may have unusual responses to medications, so low dosages should be tried first and gradually increased as appropriate.
• Chronic illnesses such as CFIDS are traumatic for the child's family as well as the child, and support from school officials, physicians and friends is important.

Recovery

• In the few published studies that have looked at outcomes of pediatric CFIDS, eight to 27 percent of children with CFIDS "recovered," 27 - 46 percent improved, and 12 - 29 percent remained unchanged from the onset of the illness.⁴
• A 13 year follow-up study of 46 children and adolescents involved in an unexplained outbreak of CFIDS in Lyndonville, NY, showed the majority (80%) considered themselves completely recovered or had made some improvement.
• Children with CFIDS often experience an alternating pattern of relapses and remission. The majority do not report a progressive worsening of their symptoms.

Cause

• The cause of CFIDS remains unknown. Many viral, bacterial and psychological causes have been considered and rejected, but the search continues.
• Ten to 15 percent of people with CFIDS have one or more family members who also have the illness, leading researchers to speculate that genetics may play a role.⁵

About The CFIDS Association of America

• The CFIDS Association of America is the leading organization dedicated to conquering CFS and related disorders. Since 1987, the Association has invested more than $13 million in CFS education, public policy and research efforts.
• The Association's publishes,The CFIDS Chronicle , the world's most authoritative and widely read source of information about CFS, The CFS Research Review  a source of information on diagnosis, treatment and research for medical professionals.

Related Information

• Case definition
• Coping Issues
• Diagnosis
• Lifestyle Changes
• Orthostatic Intolerance
• Symptoms
• Treatment  
• Youth

References

1. Stewart JM et al. Orthostatic intolerance in adolescent chronic fatigue syndrome. Pediatrics . 1999; 103: 116-21.
2. Karas B et al. The postural orthostatic tachycardia syndrome: a potentially treatable cause of chronic fatigue, exercise intolerance, and cognitive impairment in adolescents. Pacing Clin Electrophysiol 2000; 23: 344-51.
3. Bell DS. CFIDS in children part II: Management of school-related problems. The CFIDS Chronicle , Spring 1989.
4. Bell DS. Chronic fatigue syndrome in children and adolescents: a review. Focus & Opinion: Pediatrics 1995; 1 (5): 412-20.
5. Bell DS et al. Thirteen year follow-up of children and adolescents with chronic fatigue syndrome. Pediatrics. 2001;107:994-98.
6. Gunn, W.J. Chronic fatigue syndrome: diagnosing the doubt. Lecture, CTV television conference.