Where to find the Pediatric Case Definition for ME/CFS

By 2006, the International Association of Chronic Fatigue Syndrome Working Group for a ME/CFS Pediatric Definition developed and published (in the Journal of Chronic Fatigue Syndrome, v. 13 n.2/3, 2006) a comprehensive "Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome." The paper also included an instrument (a comprehensive questionnaire) that doctors and other professionals can use to specifically assess ME/CFS in children.

The International Association of CFS, (now the International Association of CFS/ME) is the international group of ME/CFS researchers and clinicians. Under its auspices, a number of the leading researchers and clinicians in the field of pediatric ME/CFS came together to develop the definition. These included: Dr. Leonard Jason, Dr. David Bell, Dr. Charles Lapp, Dr. Karen Jordan, Dr. Kenny de Meirlier, and Dr. Alan Gurwitt (a long-time member of the Massachusetts CFIDS/ME & FM Association), along with other experts.

Read the full 2006 pediatric ME/CFS definition. 

In 2008, a slightly revised version of the 2006 pediatric case definition was published:

Jason et al., "A Case Definition for Children with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome," in Clinical Medicine: Pediatrics 1, (2008): 53-57.

This shorter and revised version can be viewed here. (The 2006 definition is the most comprehensive, along with its assessment instrument; but the 2008 version is probably more readable and usable for general pediatricians. Updated revisions in the 2008 version will be noted below.)

There is a helpful activity questionnaire and diagnostic checksheet for clinicians.

The 2006 Pediatric Case Definition includes sections: "Diagnosis and Prognosis", ‘Differentiate between Diagnoses", "Prevalence of Pediatric ME/CFS", "Changes from the Adult Definition", "Clarification of Diagnostic Criteria", "Psychological Instruments", "Interventions to Increase Quality of Life", and "Suggestions for Future Research on Pediatric ME/CFS". The entire article is 23 pages, although the diagnostic criteria list is 2 ½ pages. We will present a brief summary of the criteria below.

The definition itself contains elements of the 1994 CDC adult case definitions along with the 2003 Reeves et al. revisions. However, the structure of the 2003 Canadian adult ME/CFS definition is prominently incorporated into the new pediatric definition—thereby giving additional weight to symptoms based not exclusively on fatigue.

During the diagnostic process, the doctor "must carry out a thorough evaluation, including a comprehensive medical and developmental history, physical examination and laboratory tests to confirm diagnosis. The history should involve both parents as well as the child..."