Category: Pediatric ME/CFS

Practitioner review: chronic fatigue syndrome in childhood

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is being increasingly recognized in children and adolescents. Yet comparatively little attention has been given in the literature to management.

METHODS: Description of the main features of the disorder, precipitating and maintaining factors and diagnostic assessment. Outline of different views on the nature and treatment of CFS in childhood. Description of a rehabilitation program based on cognitive behavior therapy and graded activity.

RESULTS: Using adult research criteria, CFS can be diagnosed in children and adolescents. In its severe form it is often triggered by infectious illness episodes. It is commonly associated with mood disorders in the child and with mental distress and high levels of emotional involvement in parents. A number of patient support groups hold the view that CFS is a medical disorder, contest a psychiatric contribution and advocate ‘pacing’ as an approach to rehabilitation which includes avoiding activities. To date there is no empirical evidence for the efficacy of this approach. Research in adults, open and clinical reports in children support the use of graded activity and family cognitive behavior therapy. The main aim is to enable children, with the help of their family, to carry out their own rehabilitation with some support and guidance from a health professional. Engaging the child and family in treatment and forming a therapeutic alliance is a continual process and a crucial aspect of management, as many families view the condition as a medical disorder and are initially ambivalent towards this approach.

CONCLUSIONS: There is controversy about the nature and management of CFS in childhood but a rehabilitation program based on family cognitive behavior therapy can be implemented and seems to hold most promise in the management of children with CFS. Family engagement is a crucial aspect of management.

 

Source: Elena Garralda M, Chalder T. Practitioner review: chronic fatigue syndrome in childhood. J Child Psychol Psychiatry. 2005 Nov;46(11):1143-51. http://www.ncbi.nlm.nih.gov/pubmed/16238661

 

Children and adolescents with Chronic Fatigue Syndrome in non-specialist settings: beliefs, functional impairment and psychiatric disturbance

Abstract:

BACKGROUND: Adolescents with Chronic Fatigue Syndrome (CFS) seen in specialist centres have substantial psychological and functional impairment. Beliefs about activity levels may be important in the development of CFS.

METHOD: The aim was to investigate psychological and functional impairment, and beliefs in children and adolescents with CFS recruited from non-specialist services. A total of 30 such individuals participated, and 30 young people with Inflammatory Bowel Disease (IBD) formed the comparison group.

RESULTS: Emotional symptoms and disorder were high in both groups. In all, 50% of those with CFS and 30% with IBD reached the threshold for emotional disorder according to the Strengths and Difficulties Questionnaire (SDQ) parent report, although this difference did not reach statistical significance. Participants with CFS scored statistically significantly higher on measures of functional impairment, including school non-attendance, compared to those with IBD. According to questionnaire responses, those with CFS were statistically significantly more likely to favour rest rather than exercise compared to those with IBD. Comparison of parental beliefs did not show such a difference.

CONCLUSIONS: These young people with CFS were at high risk of psychiatric disorder. They were substantially disabled when compared to individuals with a known chronic illness. Also, as a group, they were characterised by a preference for rest rather than exercise.

 

Source: Richards J, Turk J, White S. Children and adolescents with Chronic Fatigue Syndrome in non-specialist settings: beliefs, functional impairment and psychiatric disturbance. Eur Child Adolesc Psychiatry. 2005 Sep;14(6):310-8. http://www.ncbi.nlm.nih.gov/pubmed/16220215

 

The definition of disabling fatigue in children and adolescents

Abstract:

BACKGROUND: Disabling fatigue is the main illness related reason for prolonged absence from school. Although there are accepted criteria for diagnosing chronic fatigue in adults, it remains uncertain as to how best to define disabling fatigue and Chronic Fatigue Syndrome (CFS) in children and adolescents. In this population-based study, the aim was to identify children who had experienced an episode of disabling fatigue and examine the clinical and demographic differences between those individuals who fulfilled a narrow definition of disabling fatigue and those who fulfilled broader definitions of disabling fatigue.

METHODS: Participants (aged 8-17 years) were identified from a population-based twin register. Parent report was used to identify children who had ever experienced a period of disabling fatigue. Standardised telephone interviews were then conducted with the parents of these affected children. Data on clinical and demographic characteristics, including age of onset, gender, days per week affected, hours per day spent resting, absence from school, comorbidity with depression and a global measure of impairment due to the fatigue, were examined. A narrow definition was defined as a minimum of 6 months disabling fatigue plus at least 4 associated symptoms, which is comparable to the operational criteria for CFS in adults. Broader definitions included those with at least 3 months of disabling fatigue and 4 or more of the associated symptoms and those with simply a minimum of 3 months of disabling fatigue. Groups were mutually exclusive.

RESULTS: Questionnaires were returned by 1468 families (65% response rate) and telephone interviews were completed on 99 of the 129 participants (77%) who had experienced fatigue. There were no significant differences in demographic and clinical characteristics or levels of impairment between those who fulfilled the narrower definition and those who fulfilled the broader definitions. The only exception was the reported number of days per week that the child was affected by the fatigue. All groups demonstrated evidence of substantial impairment associated with the fatigue.

CONCLUSION: Children and adolescents who do not fulfil the current narrow definition of CFS but do suffer from disabling fatigue show comparable and substantial impairment. In primary care settings, a broader definition of disabling fatigue would improve the identification of impaired children and adolescents who require support.

 

Source: Fowler T, Duthie P, Thapar A, Farmer A. The definition of disabling fatigue in children and adolescents. BMC Fam Pract. 2005 Aug 9;6:33. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1192794/ (Full article)

 

Disturbed adrenal function in adolescents with chronic fatigue syndrome

Abstract:

OBJECTIVE: To investigate adrenal function in children and adolescents with chronic fatigue syndrome (CFS) compared with age-matched controls.

METHODS: Case-control study of low dose (500 ng/m2) synacthen tests (LDST) in 23 adolescents with CFS and 17 age-matched controls. Serum cortisol concentrations were measured at 5-min intervals from 10 to 45 minutes. Peak serum cortisol concentration, time to peak, rise in cortisol and area under the curve (AUC) were derived.

RESULTS: Patients with CFS had significantly lower mean cortisol levels during the LDST (p <0.001), lower peak cortisol (p <0.025), reduced cortisol AUC (p <0.005) and longer time to peak cortisol (p <0.05). Abnormalities were seen in both sexes but were more pronounced in females. Unstimulated adrenal androgen and 17-hydroxyprogesterone concentrations were normal.

CONCLUSIONS: Adolescents with CFS have subtle alterations in adrenal function suggesting a reduction in central stimulation of the adrenal glands. The more pronounced effects in females may reflect differential central effects of stress on hypothalamic-pituitary-adrenal axis regulation between the sexes.

 

Source: Segal TY, Hindmarsh PC, Viner RM. Disturbed adrenal function in adolescents with chronic fatigue syndrome. J Pediatr Endocrinol Metab. 2005 Mar;18(3):295-301. http://www.ncbi.nlm.nih.gov/pubmed/15813608

 

Is chronic fatigue syndrome a connective tissue disorder? A cross-sectional study in adolescents

Abstract:

OBJECTIVES: To investigate whether constitutional laxity of the connective tissues is more frequently present in adolescents with chronic fatigue syndrome (CFS) than in healthy controls. Increased joint hypermobility in patients with CFS has been previously described, as has lower blood pressure in fatigued individuals, which raises the question of whether constitutional laxity is a possible biological predisposing factor for CFS.

DESIGN: Cross-sectional study.

PARTICIPANTS: Thirty-two adolescents with CFS (according to the criteria of the Centers for Disease Control and Prevention) referred to a tertiary hospital and 167 healthy controls.

METHODS: The 32 adolescents with CFS were examined extensively regarding collagen-related parameters: joint mobility, blood pressure, arterial stiffness and arterial wall thickness, skin extensibility, and degradation products of collagen metabolism. Possible confounding factors (age, gender, height, weight, physical activity, muscle strength, diet, alcohol consumption, and cigarette smoking) were also measured. The results were compared with findings in 167 healthy adolescents who underwent the same examinations.

RESULTS: Joint mobility, Beighton score, and collagen biochemistry, all indicators of connective tissue abnormality, were equal for both groups. Systolic blood pressure, however, was remarkably lower in patients with CFS (117.3 vs. 129.7 mm Hg; adjusted difference: -13.5 mm Hg; 95% confidence interval [CI]: -19.1, -7.0). Skin extensibility was higher in adolescents with CFS (mean z score: 0.5 vs. 0.1 SD; adjusted difference: 0.3 SD; 95% CI: 0.1, 0.5). Arterial stiffness, expressed as common carotid distension, was lower in adolescents with CFS, indicating stiffer arteries (670 vs 820 mum; adjusted difference: -110 mum; 95% CI: -220, -10). All analyses were adjusted for age, gender, body mass index, and physical activity. Additionally, arterial stiffness was adjusted for lumen diameter and pulse pressure.

CONCLUSIONS: These findings do not consistently point in the same direction of an abnormality in connective tissue. Patients with CFS did have lower blood pressure and more extensible skin but lacked the most important parameter indicating constitutional laxity, ie, joint hypermobility. Moreover, the collagen metabolism measured by crosslinks and hydroxyproline in urine, mainly reflecting bone resorption, was not different. The unexpected finding of stiffer arteries in patients with CFS warrants additional investigation.

 

Source: van de Putte EM, Uiterwaal CS, Bots ML, Kuis W, Kimpen JL, Engelbert RH. Is chronic fatigue syndrome a connective tissue disorder? A cross-sectional study in adolescents. Pediatrics. 2005 Apr;115(4):e415-22. http://www.ncbi.nlm.nih.gov/pubmed/15805343

 

Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: data are insufficient and conclusion inappropriate

Comment on: Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial. [BMJ. 2005]

 

Editor—I have concerns about the design and interpretation of the study reported by Stulemeijer et al on cognitive behaviour therapy for adolescents with chronic fatigue syndrome.1 The trial arms were not matched for the number of contacts with healthcare professionals. Experience from larger and more carefully controlled randomised interventional trials of patients with chronic fatigue syndrome has clearly shown that short term improvement in symptoms is related directly to the maintenance of regular contacts with healthcare professionals rather than the therapeutic effect of the intervention itself and consequently, the improvement is not sustained once the contact is lost.2

The authors did not offer patients in their waiting list the opportunity to meet therapists regularly for five months but without having cognitive behaviour therapy. Few follow up data on patients in the intervention arm show that the specific treatment benefit was carried forward without regular contacts with the therapists. A cautious approach is essential in inferring direct benefit from cognitive behaviour therapy in the intervention arm (as opposed to short term benefit from close contact with therapists). The level of activity in some of their participants whom the authors considered to be passive remained unclear.

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC555921/

 

Source: Chaudhuri A. Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: data are insufficient and conclusion inappropriate. BMJ. 2005 Apr 2;330(7494):789-90; author reply 790. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC555921/ (Full article)

 

A feasibility study comparing two treatment approaches for chronic fatigue syndrome in adolescents

Chronic fatigue syndrome (CFS) involves severe disabling fatigue that affects physical and mental functioning.1 Reported prevalence varies between 0.05% and 2% depending on definitions and methodologies.2 3 There are significant short and long term effects on young people and their families, including long term school non-attendance.4 5 Most reported studies are not randomised, are from a variety of different clinical settings, and show variable outcomes: 5–20% being seriously incapacitated in the longer term, with larger numbers having residual symptoms.2 6–9

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1720370/pdf/v090p00369.pdf

 

Source: Wright B, Ashby B, Beverley D, Calvert E, Jordan J, Miles J, Russell I, Williams C. A feasibility study comparing two treatment approaches for chronic fatigue syndrome in adolescents. Arch Dis Child. 2005 Apr;90(4):369-72. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1720370/pdf/v090p00369.pdf (Full article)

 

Prevalence of severe fatigue in primary care

Although chronic fatigue in UK adult primary care patients is relatively common,1 there have been no comparative studies in children. Estimates of the prevalence of chronic fatigue syndrome (CFS) or CFS-like illness in children vary widely according to case definition and methodology and range from 2.7/100 0002 to 570/ 100 000,3 although they all suggest that the prevalence is lower than among adults.1

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1720362/pdf/v090p00367.pdf

 

Source: Haines LC, Saidi G, Cooke RW. Prevalence of severe fatigue in primary care. Arch Dis Child. 2005 Apr;90(4):367-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1720362/pdf/v090p00367.pdf (Full article)

 

Family health and characteristics in chronic fatigue syndrome, juvenile rheumatoid arthritis, and emotional disorders of childhood

Abstract:

OBJECTIVE: To compare family health and characteristics in children with chronic fatigue syndrome (CFS), in juvenile rheumatoid arthritis (JRA), and emotional disorders.

METHOD: Parents of 28 children and adolescents aged 11 to 18 years with CFS, 30 with JRA, and 27 with emotional disorders (i.e., anxiety and/or depressive disorders) were recruited from specialty clinical settings and completed interviews and questionnaires assessing family health problems, parental mental distress, illness attitudes, and family burden of illness.

RESULTS: Parents of children with CFS were significantly more likely than those of children with JRA to report a history of CFS-like illness, high levels of mental distress, and a tendency to experience functional impairment in response to physical symptoms. Families of children with CFS were characterized by significantly greater emotional involvement and reported greater family burden related to the child’s illness in comparison with families of children with JRA.

CONCLUSIONS: CFS in childhood and adolescence is associated with higher levels of parental CFS-like illness, mental distress, emotional involvement, and family illness burden than those observed in association with JRA, a chronic pediatric physical illness.

 

Source: Rangel L, Garralda ME, Jeffs J, Rose G. Family health and characteristics in chronic fatigue syndrome, juvenile rheumatoid arthritis, and emotional disorders of childhood. J Am Acad Child Adolesc Psychiatry. 2005 Feb;44(2):150-8. http://www.ncbi.nlm.nih.gov/pubmed/15689728

 

Development of a functional ability scale for children and young people with myalgic encephalopathy (ME)/chronic fatigue syndrome (CFS)

Abstract:

The numerous symptoms and unpredictable pattern of myalgic encephalopathy (ME) make it difficult to describe, especially for children. It was left to carers to guess what the child could achieve each day, often leading to over/underestimates. A functional ability scale was needed, which measured from 0 to 100 percent able and that children and young people themselves designed.

A new scale was developed from the Moss Ability Scale using the critique of 251 children and young people from the Association of Young People with ME (AYME). Responding to the shift in emphasis towards patients taking an active role in their own care, it was felt these young people would know whether the scale measured what it had set out to measure, and were asked questions on the face and content validity of the scale. There was a 99 percent agreement between the young people that the final scale was ‘workable’ or better.

 

Source: Moss J. Development of a functional ability scale for children and young people with myalgic encephalopathy (ME)/chronic fatigue syndrome (CFS). J Child Health Care. 2005 Mar;9(1):20-30. http://www.ncbi.nlm.nih.gov/pubmed/15684437