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."
In 2006, a study in Chicago, Illinois by Jordan, et al, concluded that the overall prevalence rate for a community-based sample of adolescents (aged 13 to 17) was 181 per 100,000 or .181%.
- June 2017, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (OPEN ACCESS/FULL TEXT). Authors: Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart, Rosamund Vallings and Katherine S. Rowe
Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.
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
A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome* was developed in 2006 by Leonard Jason, et al.
*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.
The CDC provides Factsheets for Healthcare Professionals, Parents/Guardians, and Education Professionals. (2014)
- 2017, A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer - Youtube "This webinar is led by Peter Rowe, MD, director of the Chronic Fatigue Clinic and professor of pediatrics at Johns Hopkins Children’s Center in Baltimore, Maryland." Webinar by Solve ME/CFS.
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.
- 2006, A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome FULL TEXT
"Abstract - For a diagnosis of chronic fatigue syndrome (CFS), most researchers use criteria that were developed by Fukuda et al. (1994), with modifications suggested by Reeves et al. (2003). However, this case definition was established for adults rather than children. A Canadian Case Definition (ME/CFS; Myalgic Encephalomyelitis/CFS) has recently been developed, with more specific inclusion criteria (Carruthers et al., 2003). Again, the primary aim of this case definition is to diagnose adult CFS. A significant problem in the literature is the lack of both a pediatric definition of ME/CFS and a reliable instrument to assess it. These deficiencies can lead to criterion variance problems resulting in studies labeling children with a wide variety of symptoms as having ME/CFS. Subsequently, comparisons between articles become more difficult, decreasing the possibility of conducting a meta-analysis. This article presents recommendations developed by the International Association of Chronic Fatigue Syndrome Pediatric Case Definition Working group for a ME/CFS pediatric case definition. It is hoped that this pediatric case definition will lead to more appropriate identification of children and adolescents with ME/CFS."
- 1997, Research with Children and Adolescents with Chronic Fatigue Syndrome: Methodologies, Designs, and Special Considerations
- Cognitive dysfunction
- Post-exertional malaise
- Primer for family, friends and care providers
- Journal of Chronic Fatigue Syndrome: Volume 13, Issue 2-3, 2006 - entire issue devoted to pediatric ME/CFS
- 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
- Karen M. Jordan, Cheng-Fang Huang, Leonard A. Jason, Judith Richman, Cynthia J. Mears, William McCready, Ben Z. Katz, Penny M. Ayers, Alfred Rademaker & Kari K. Taylor. (2006). Prevalence of Pediatric Chronic Fatigue Syndrome in a Community-Based Sample. Journal of Chronic Fatigue Syndrome, Vol. 13, Iss. 2-3, pp. 75-78. http://dx.doi.org/10.1300/J092v13n02_04
- Rowe, Peter C.; Underhill, Rosemary A.; Friedman, Kenneth J.; Gurwitt, Alan; Medow, Marvin S.; Schwartz, Malcolm S.; Speight, Nigel; Stewart, Julian M.; Vallings, Rosamund; Rowe, Katherine S. (2017), "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer", Frontiers in Pediatrics, 5 (121), doi:10.3389/fped.2017.00121
- Jason, Leonard A; Jordan, Karen; Miike, Teruhisa; Bell, David S; Lapp, Charles; Torres-Harding, Susan; Rowe, Kathy; Gurwitt, Alan; De Meirleir, Kenny; Van Hoof, Elke LS (2006), "A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome", Journal of Chronic Fatigue Syndrome, 13 (2-3): 1-44, doi:10.1300/J092v13n02_01
- 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
- Karen M. Jordan, Amy M. Kolak & Leonard A. Jason. (1997). Research with Children and Adolescents with Chronic Fatigue Syndrome: Methodologies, Designs, and Special Considerations. Journal of Chronic Fatigue Syndrome, Vol. 3, Iss. 2, pp 3-13. http://dx.doi.org/10.1300/J092v03n02_02