Research and clinical experience from around the world confirm that Chronic Fatigue Syndrome (CFS) strikes children and adolescents. What’s more, the CFS that young people experience is sometimes more challenging to diagnose and manage because the current diagnostic criteria and much of the literature were based on adults. But the recent release of a specialized pediatric case definition may change all that.
In 2005 the International Association of CFS/ME (IACFS/ME) formed a working group to tackle the challenge of helping researchers and clinicians accurately diagnose children and adolescents with the illness. Comprised of leading researchers and medical professionals with pediatric CFS experience, the group crafted two key tools: a pediatric definition for CFS and a reliable assessment instrument.
According to the group, not having a definition that addresses children and adolescents has hindered pediatric research, and it could be limiting the chances of treatment and recovery for young people.
Says Leonard Jason, PhD, a member of the working group and a leading CFS authority, “The current case definition was developed for adults with this illness, and we felt that it was important to develop a definition that was sensitive to the issues of this illness in youth.”
The definition Jason and his colleagues published in the Journal of Chronic Fatigue Syndrome, titled “A Pediatric Case Definition for ME/CFS,” differs from the adult criteria in several ways. First, the pediatric criteria begin with three months of clinically evaluated, unexplained fatigue rather than the six-month benchmark of the adult criteria. Pediatric patients must also experience symptoms of postexterional malaise; unrefreshing sleep or sleep disturbance; widespread or migratory myofacial, joint, abdominal or head pain; two or more neurocognitive manifestations; and at least one symptom from two of three subcategories including autonomic problems, neuroendocrine problems and immune problems. And although a number of exclusionary medical conditions are listed (such as narcolepsy and MS), a long list of disorders do not exclude a diagnosis of CFS, including school phobia, separation anxiety and depressive disorders.
The new guidelines also designate a distinct classification of “atypical ME/CFS” for children who meet many but not all of the requirements for CFS.
The assessment instrument, titled the “DePaul Pediatric Health Questionnaire” has two versions: one for a child to fill out and one for an adult guardian or health care professional to complete with the child’s assistance. The questions capture data on a variety of symptoms that shed light on the child’s illness experience and can be scored by a health care professional against the diagnostic criteria.
The definition and assessment instrument are available for use in clinical practice today, but your doctor may not yet be aware of them. If you’re the parent of a child with CFS or you suspect your child may have this illness, you can get a copy for your physician from the IACFS/ME website at www.aacfs.org/p/271.html.