Does Chronic Fatigue Syndrome (CFS) Occur in Children?
Chronic Fatigue Syndrome is a serious, debilitating and frustrating condition experienced by thousands of adolescents in the U.S. Our ID group diagnoses approximately 40 cases of CFS per year. Most cases occur in previously healthy, high achieving adolescent females. There is no official case definition for children.
The case definition used in adults includes two criteria:
- Severe, chronic fatigue of six months or longer, with other known medical conditions excluded by clinical diagnosis.
- Concurrently have four or more of the following symptoms: short term memory or concentration impairment, sore throat, tender lymph nodes, muscle or joint pain without redness or swelling, headaches of a new type, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours.
We generally do not wait six months to diagnose CFS in adolescents since school absenteeism is a common feature of this illness and early intervention by the PCP may help avoid the academic and school consequences of prolonged school absence.
What are the important questions to ask when obtaining the history?
CFS is a clinical diagnosis and therefore a diagnosis of exclusion. It is essential that a very complete history be obtained. A complete review of systems is particularly important. The syndrome often begins abruptly with an acute mono-like illness followed by prolonged convalescence with multiple complaints of excessive fatigue, generalized weakness and often headache or muscle aches. The working diagnosis often includes “chronic mono or chronic Lyme”. By the time we evaluate these children, they are almost always unable to attend school and are being home schooled or tutored. They often have very disturbed sleep cycles and excessive sleep. The history should include recent travel, animal exposure, foreign visitors, prior significant infections, details of any fevers, signs or symptoms of depression, family history of rheumatologic disease, oncologic disease, thyroid disease, and psychiatric disease. The adolescent should be interviewed privately at some point regarding any issues of sexual activity, drug use, abuse, or depression Fever (temps > 38.3) is NOT a feature of CFS and a daily fever diary with the temperature measured at the same time each evening should be recommended and reviewed if the family reports fever.
What diseases should I consider in the differential diagnosis?
You should think about diseases that may present with non-specific signs and symptoms in adolescent females. Collage vascular diseases including lupus, autoimmune hepatitis and inflammatory bowel disease present in this age group. If headache is a prominent symptom, brain tumor should be considered. Chronic infectious diseases that might present with months of symptoms include TB, fungal disease, HIV, endocarditis or Lyme arthritis. Oncologic diseases in this age group would include leukemia and lymphoma. Metabolic diseases to think about include hypothyroidism and Addison’s disease.
What about the Physical Exam?
The physical exam should be normal. Mouth ulcers, rash, or evidence of arthritis should prompt consideration of Lupus. Lymphadenopathy should raise concern for lymphoma, and an abnormal neurologic exam might suggest a brain tumor. A flat affect should suggest depression or bipolar disease. Significant weight loss could suggest anorexia nervosa or cancer.
What lab tests should I order?
Screening tests that we believe are helpful include a CBC, ESR, CRP, Complete Metabolic Panel, LFTs, TSH, UA, EBV titres, HIV antibody, PPD and a chest X-ray. Other labs or imaging should be prompted by the history or physical exam. We would not test for Lyme disease unless there was a history of travel to a Lyme endemic area and probable tick exposure.
Shouldn’t children with CFS be seen by a specialist?
A working diagnosis of CFS can and should be made by the PCP. Parents and patients should be told that all providers will keep an open mind and pursue other diagnoses if new signs or symptoms develop. The PCP has the best relationship with the child and family and is in the best position to diagnose and begin treatment for CFS.
What is the best treatment for CFS?
The best therapy for CFS is cognitive behavior therapy. The child should be seen weekly by the PCP and a plan should be created and modified each week. Initially the plan should focus on gradually restoring a normal wake, sleep cycle. Gradual increases in general activity should be specifically outlined, understanding that the first few days after the prescribed increase will result in more exhaustion transiently. Depression often accompanies CFS, but families are often reluctant to seek help from a mental health professional. The PCP should assist families in identifying a mental health provider and all 3 groups (patient/family, PCP and mental health provider) should communicate with each other regularly. Patients should be told of the excellent prognosis for children with CFS. The goal of therapy is to gradually increase activity levels at home and school until the child is back to their baseline state. This will often take several weeks to accomplish. Close communication by the PCP and family with the school is also essential.
What is the prognosis for adolescents with CFS?
Adolescents with CFS have a better prognosis than CFS in older adults. Most children are asymptomatic or significantly improved within 1-2 years after diagnosis.
Marshall, GS: Report of a workshop on the epidemiology, natural history, and pathogenesis of chronic fatigue syndrome in adolescents. J Pediatr 1999 134(4): 395-405.