Pediatric ME/CFS has been defined by the Centers for Disease Control (CDC) and the Institute of Medicine (IOM) although it is usually diagnosed in adults. "Children below the age of 8 or 9 do not have the symptom pattern of adolescents past puberty. If the onset of the disease occurs during adolescence, the most common time of onset, the pattern is similar to that of adults." Children can be diagnosed at 3 months while adults are diagnosed at six months. In 2012, the (CDC) estimated less than 20% of (adult) Americans that have CFS were diagnosed. A 2008 ProHealth survey of 1,210 (adult) ME/CFS patients showed "29% had been ill from 6 to 20-plus years before being diagnosed."
Recognized as a Pediatric disease
Pediatric ME/CFS is outlined in the 2015 Institute of Medicine report*.
The Massachusetts CFIDS/ME & FM Association has produced 6 pages of easy to step through information based on the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/MD) case definition: ME/CFS A Primer for Clinical Practitioners*.
- Pediatric ME/CFS Diagnosis* (2014)
- Page titles
- Pediatric case definition/diagnostic criteria for ME/CFS
- Exclusionary conditions
- Differential diagnosis
- Finding a doctor
- More Resources
The CDC provides Factsheets for Healthcare Professionals, Parents, and Education Professionals. (2014)
*These definitions/criteria have NOT been officially accepted into clinical care settings. However, they may be helpful in speaking to your doctor about symptoms and tests.
Tymes Trust is a UK charity dedicated to helping parents and guardians understand Pediatric ME/CFS and navigate social services, healthcare, and the school system.
- 2016, Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway.
Conclusions: This large nationwide registry linkage study confirms that the clinical picture in CFS/ME is complex. Children with CFS/ME were frequently diagnosed with infections, supporting the hypothesis that infections may be involved in the causal pathway. The long time span often observed from the first diagnosis of weakness / general tiredness to the diagnosis of CFS/ME might indicate that the treatment of these patients is sometimes not optimal.
- 2015, Pediatric ME/CFS - Institute of Medicine Report - The National Academies Press
Conclusion: There is sufficient evidence that orthostatic intolerance and autonomic dysfunction are common in pediatric ME/CFS; that neurocognitive abnormalities emerge when pediatric ME/CFS patients are tested under conditions of orthostatic stress or distraction; and that there is a high prevalence of profound fatigue, unrefreshing sleep, and post-exertional exacerbation of symptoms in these patients. There also is sufficient evidence that pediatric ME/CFS can follow acute infectious mononucleosis and EBV.
- 2015, Less efficient and costly processes of frontal cortex in childhood chronic fatigue syndrome
Abstract: The ability to divide one's attention deteriorates in patients with childhood chronic fatigue syndrome (CCFS). We conducted a study using a dual verbal task to assess allocation of attentional resources to two simultaneous activities (picking out vowels and reading for story comprehension) and functional magnetic resonance imaging. Patients exhibited a much larger area of activation, recruiting additional frontal areas. The right middle frontal gyrus (MFG), which is included in the dorsolateral prefrontal cortex, of CCFS patients was specifically activated in both the single and dual tasks; this activation level was positively correlated with motivation scores for the tasks and accuracy of story comprehension. In addition, in patients, the dorsal anterior cingulate gyrus (dACC) and left MFG were activated only in the dual task, and activation levels of the dACC and left MFG were positively associated with the motivation and fatigue scores, respectively. Patients with CCFS exhibited a wider area of activated frontal regions related to attentional resources in order to increase their poorer task performance with massive mental effort. This is likely to be less efficient and costly in terms of energy requirements. It seems to be related to the pathophysiology of patients with CCFS and to cause a vicious cycle of further increases in fatigue.
- Cognitive dysfunction
- Post-exertional malaise
- Primer for family, friends and care providers
- ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
- Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
- Canadian Case Definition: DIAGNOSTIC PROTOCOL #7 (Pg. 6), Features of ME/CFS in Children (Pg. 15)
- Chronic Fatigue Syndrome - Diagnostic Challenges - CDC - 2012
- A Profile of ME/CFS Patients - How Many Years and How Many Doctors? - ProHealth
- Bakken, IJ; Tveito, K; Aaberg, KM; Ghaderi, S; Gunnes, N; Trogstad, L; Magnus, P; Stoltenberg, C; Haberg, SE (2016), "Comorbidities treated in primary care in children with chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide registry linkage study from Norway", BMC Family Practice, 17 (1): 128, PMID 27590471, doi:10.1186/s12875-016-0527-7
- Pediatric ME/CFS - Institute of Medicine Report - The National Academies Press Chapter 8, Pg. 201
- Mizuno, K.; Tanaka, M.; Tanabe, H.C.; Joudoi, T.; Kawatani, J.; Shigihara, Y.; Tomoda, A; Miike, T; Imai-Matsumura, K; Sadato, N; Watanabe, Y (2015), "Less efficient and costly processes of frontal cortex in childhood chronic fatigue syndrome", NeuroImage : Clinical, 2015 (9): 355–368, PMID 26594619, doi:10.1016/j.nicl.2015.09.001