Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness (2015) / Chapter Skim
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6 Pediatric ME/CFS
6 Pediatric ME/CFS
Pages 181-208
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From page 181... ...
The Royal College of Paediatrics and Child Health proposed pediatric criteria for ME/CFS in 2004 (Royal College, 2004)
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From page 182... ...
. The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)
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From page 183... ...
, a very limited number of long-term follow-up studies reported recovery rates in the ME/CFS pediatric population. Several studies found that 20 to 48 percent of pediatric patients diagnosed using the Fukuda definition showed no improvement or actually had worse fatigue and physical impairment at follow-up times ranging from 2 to 13 years (Bell et al., 2001; Gill et al., 2004; Van Geelen et al., 2010)
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From page 184... ...
These differences may be related to the definition of the illness used, the duration of the illness at the time of the survey, the way the questions about PEM were posed, the types of effort (cognitive/physical activity or orthostatic stress) considered capable of provoking PEM symptoms, the duration of symptom provocation that qualified as PEM (hours versus more than 1 day)
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From page 185... ...
Those with ME/CFS had increased sympathetic activity at rest, with exaggerated cardiovascular responses to orthostatic stress, but attenuated cardiovascular responses to isometric exercise. Only one study assessed fatigue levels in pediatric ME/CFS patients and found that no child among the 20 who underwent exercise testing "reported excessive fatigue levels in the three days after the exercise test" (Takken et al., 2007, p. 582)
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From page 186... ...
Evidence for Orthostatic Intolerance and Autonomic Dysfunction in Pediatric ME/CFS The committee examined the literature on the presentation of orthostatic intolerance and related autonomic abnormalities based on both patient report measures and objective testing in pediatric ME/CFS patients and the differences compared with healthy or diseased controls. Orthostatic Testing in Pediatric ME/CFS The committee reviewed five studies that compared rates of orthostatic intolerance between controls and those with ME/CFS.
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From page 187... ...
At the 6-month point after recovery from infectious mononucleosis, 25 percent of ME/CFS patients and 21 percent of controls met the study definition for orthostatic intolerance, a null finding that stands out from the rest of the literature. Regardless of differences in methods of orthostatic testing, all studies with controls that examined adolescents with ME/CFS showed a numerically higher prevalence of circulatory disorders, most notably POTS and NMH, in ME/CFS patients.
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From page 188... ...
All of the studies revealed a sympathetic predominance of heart rate control and enhanced vagal withdrawal during either mild or moderate orthostatic stress or lower-body negative pressure (a method of simulating orthostatic stress)
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. Two studies conducted with adequate methodology, describing the same group of patients, assessed the effects of combined orthostatic stress and increasingly challenging neurocognitive tasks (Ocon et al., 2012; Stewart et
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. The authors conclude that orthostatic stress results in neurocognitive impairment in CFS/POTS but not in healthy controls.
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compared ambulatory recordings of heart rate and blood pressure in 44 adolescents with ME/CFS and 52 healthy controls. This study used a relatively broad definition of ME/CFS, requiring at least 3 months of fatigue but no other somatic symptoms.
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autonomic symptoms at baseline and (2) days spent in bed with the initial infection as the only significant risk factors for developing ME/CFS after infectious mononucleosis (Jason et al., 2014)
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From page 193... ...
Pathogens for which the serological evidence argues against a causal role in a large proportion of pediatric ME/CFS cases are CMV, HHV-6, coxsackie viruses, and parvovirus B19.2 There has been relatively little study of enteroviruses, however, and there is a relative paucity of data on B. burgdorferi. IMMUNE IMPAIRMENT Because ME/CFS often begins after an apparent infection, an important issue regarding the pathophysiology of the illness is whether its symptoms are due to a persistent infection or to the triggering infection acting as a "hit and run" phenomenon, initiating immune system or other physiologic dysfunctions that in turn cause chronic symptoms.
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-8 and reductions in IL-23 (Broderick et al., 2012) ; • increased anti-Sa (a 62 kDa protein found in those with autoim mune fatigue syndrome)
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NEUROENDOCRINE MANIFESTATIONS The overlap of ME/CFS symptoms with those of adrenal insufficiency, together with inconsistent reports of lower cortisol values in adults with ME/CFS, has prompted several investigations into neuroendocrine abnormalities in pediatric ME/CFS. Similarly, reports of orthostatic intolerance have led to investigations of catecholamines and other hormones involved in the regulation of circulation in pediatric ME/CFS patients.
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Despite this limitation, children with ME/CFS had significantly lower mean cortisol levels than controls throughout the test. Their peak cortisol was lower, and the time to reach the peak level was longer.
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. It is important to note, however, that even in studies reporting lower cortisol levels in adolescents with ME/CFS than in controls, the mean cortisol levels reported for those with ME/CFS remain within the normal range.
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From page 198... ...
showed that among 25 children with ME/CFS, recruited from support groups in the United Kingdom, only 1 attended regular classes. Compared with healthy controls, Child Health Questionnaire scores for the ME/CFS group were lowest on global health, physical function, and role/social limitations due to physical problems.
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From page 199... ...
Their sample included 189 adolescents ages 10 to 18 years who had noted a definite onset of ME/CFS over hours to several days, as well as 68 healthy adolescents. Among those with ME/CFS, more than 87 percent had experienced the following within the preceding month: prolonged fatigue following minor activity, headache, the need for excessive sleep, loss of ability to concentrate, disturbed sleep, excessive muscle fatigue, and myalgia following minor activity.
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Among the three phenotypes, the musculoskeletal factor had the strongest association with fatigue, while the sore throat phenotype was the least severely affected group. The migraine group had the lowest physical function and had worse school attendance.
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Chapter 7 presents the committee's recommendations on diagnostic criteria for ME/CFS in children and adolescents. 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 dis traction; and that there is a high prevalence of profound fatigue, unrefreshing sleep, and post-exertional exacerbation of symptoms in these patients.
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2009. Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy.
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2008. A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome.
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2010. Exercise tolerance testing in a prospective cohort of adolescents with chronic fatigue syndrome and recovered controls following infectious mononucleosis.
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1999. Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome.
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2013. Relationship between autonomic cardiovascular control, case definition, clinical symptoms, and functional disability in adolescent chronic fatigue syndrome: An exploratory study.
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2008b. Sympathetic cardiovascular control during orthostatic stress and isometric exercise in adolescent chronic fatigue syndrome.
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