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The Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy/ Myalgic Encephalomyelitis (CFS/CFIDS/ME) is not an illness limited to adults. The illness also occurs in both children and adolescents. Although CFS/CFIDS/ME in both children and adults is the same illness syndrome, there are some variations in the symptoms and the course of illness between adults and children. Pediatric CFS/CFIDS/ME can range in severity from mild to moderate ("moderate symptoms at rest that become severe with effort-unable to attend school") to severe ("often housebound or bed-bound").
In a community-based study in Chicago using the 1994 Centers for Disease Control & Prevention (CDC) case definition (Jason et al., 1999; Jordan et al., 2006) children and adolescents were found to have CFS/CFIDS/ME at a rate of 60 cases per 100,000. A second study in 2006 (Jason) "...found the prevalence of pediatric ME/CFS among the general adolescent population to be about...1.8 out of each 1,000 American children." (CFIDS Chronicle, Summer 2007) This rate makes pediatric CFS/CFIDS/ME more prevalent than sickle cell anemia, pediatric heart disease, and Down's syndrome among children.
Most child and adolescent cases are endemic—that is, the illness strikes an individual and not a cluster of individuals in geographic or social proximity. However, epidemic cases do occur, notably an epidemic in Lyndonville, N.Y. from 1984-1987, in which many children in a small, upstate community became sick during the same time period. Sometimes, a sibling or parent would also become ill. (Much earlier episodic outbreaks before 1960 were often associated with epidemics of unusual versions of "atypical mild polio".)
Prior to 2006, especially before 2003 when the CFS/CFIDS/ME Canadian definition was published, children and adolescents were diagnosed in the United States by either the 1988 or the 1994 CDC adult definitions. In England, many children were, unfortunately, diagnosed according to the entirely faulty Oxford definition. In 1997, in the Netherlands, a case definition was proposed "in order to increase coherence in child ME/CFS" (DeJong et al.). The 2003 Canadian definition proposed, in a short section, that children could be diagnosed if their symptoms lasted more than 3 months—as opposed to the adult 6-month standard.
The Need for A Specific Pediatric Case Definition for Children and Adolescents
Despite the diagnostic improvement provided by the 2003 adult Canadian definition, the lack of a specific CFS/CFIDS/ME diagnostic criteria for children and adolescents continued to create very serious problems. Except for a few clinicians, including Dr. David Bell in Lyndonville, New York, CFS/CFIDS/ME researchers and clinicians knew even less about many of the specific aspects of pediatric CFS/CFIDS/ME than they knew about the adult illness.
The lack of any diagnostic criteria defining and substantiating the illness in children certainly did nothing to support the recognition of the existence of pediatric CFS/CFIDS/ME. The defining and naming of an illness gives validation to its existence—moreover such validation provides an incentive to medical research, and research provides further validation.
Dr. Leonard Jason (a pioneer in pediatric CFS/CFIDS/ME) and Nicole Porter in the CFIDS Chronicle Summer 2007 summed up the problems stemming from the lack of a specific pediatric case definition:
"Due to the lack of understanding and the long absence of a clear, pediatric-specific case definition for the illness, under-diagnosis or medical misunderstanding can lead to long-term developmental impediments not directly related to the physiological disorder."
"For example, without a clearly defined medical explanation for frequent absences and academic challenges, the skepticism, marginalization and punitive measures taken by many school districts and local judicial systems have caused additional problems for many families already dealing with the immediate difficulties associated with this illness."
"Disturbingly, these diagnostic problems sometimes lead to juvenile truancy charges and even allegations of parental abuse and neglect. This makes the misdiagnosis and under-diagnosing of pediatric ME/CFS a critical issue—forcing a family to negotiate the continuous compromises to the child's physical health, while also struggling against a system that doesn't understand and validate the illness and special issues the child faces."
In addition to these many difficulties, "The lack of application of a consistent pediatric definition of ME/CFS and the lack of a reliable instrument to assess it...might lead to studies which inaccurately label children with a wide variety of symptoms as having ME/CFS as well as possibly missing children who have it." (Jason et al., "A Pediatric Case Definition for ME/CFS", JCFS (2006) 13.(2/3).)
Misdiagnosis of children with CFS/CFIDS/ME as being "merely" depressed, as having a school phobia, psychosis, "attention needs", etc. is made even more probable without a validating diagnosis.
Children and Youth