Category: Pediatric ME/CFS

‘It’s like being a slave to your own body in a way’: a qualitative study of adolescents with chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a relatively common disabling illness in adolescents that may limit participation in daily life.

AIM: This study explored interactions between the illness experiences of adolescents with CFS/ME, their occupational lives and expectations for the future.

METHODS: Seven adolescents with CFS/ME were interviewed. The interviews were analyzed using thematic analysis.

RESULTS: Three themes were developed. ‘Being ruled by an unfamiliar and inexplicable body’, which illustrated that altered and strange bodies seemed to separate and disrupt the participants from their former occupational lives. ‘On the sideline of life with peers’, which demonstrated that the informants spent time at home, doing undemanding activities instead of participating in activities with peers. ‘A coherent connection between present and future life’, which was reflected by how the participants eventually accepted their situation and rebuilt a meaningful occupational life and value of self.

CONCLUSION: CFS/ME made the body unfamiliar and disconnected informants from participating in their usual daily occupations. A coherent interaction between body, occupational life and social self was achieved by taking their new body into account and adjusting their occupations accordingly. This practice enabled the participants to hope for a better future life.

Source: Njølstad BW, Mengshoel AM, Sveen U. ‘It’s like being a slave to your own body in a way’: a qualitative study of adolescents with chronic fatigue syndrome. Scand J Occup Ther. 2018 Apr 1:1-10. doi: 10.1080/11038128.2018.1455895. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29607759

Pediatric chronic fatigue syndrome: current perspectives

Abstract:

Pediatric chronic fatigue syndrome is an important illness as it is relatively common and also very disabling with a wide range of impacts on the child, the family, and health care systems. It is a complicated illness but the majority of children get better with specialist treatment. This literature review provides an update on the epidemiology of chronic fatigue syndrome/myalgic encephalomyelitis, including factors associated with it, and discusses the current evidence for treatment.

Source: Esther Crawley. Pediatric chronic fatigue syndrome: current perspectives. Dove Press. 29 March 2018 Volume 2018:9 Pages 27—33 https://www.dovepress.com/pediatric-chronic-fatigue-syndrome-current-perspectives-peer-reviewed-article-PHMT (You can download a PDF file of the full article.)

Chronic fatigue syndrome in Chinese middle-school students

Abstract:

The objective of the present study was to determine the prevalence of chronic fatigue syndrome (CFS) and its associated factors in middle-school students in Suzhou, China. From September 2010 to January 2011, across-sectional study was conducted in junior- and senior middle-school students aged 10 to 18 years using a battery of confidential questionnaires. Our results indicate that 18,139 completed the questionnaires effectively, of whom 163 (0.9%) met the definition of CFS, with senior high-school students and male students predominating. The prevalence of CFS in the middle-school students increased steadily with age. The main symptoms of CFS in these students included being afraid of going to school, despondency, and irritability in addition to those specified in the Centers for Disease Control and Prevention (CDC). Our study shows that CFS is prevalent among Chinese teenagers, and requiring proper intervention and treatment.

Source: Shi J, Shen J, Xie J, Zhi J, Xu Y. Chronic fatigue syndrome in Chinese middle-school students. Medicine (Baltimore). 2018 Jan;97(4):e9716. doi: 10.1097/MD.0000000000009716. https://journals.lww.com/md-journal/fulltext/2018/01260/Chronic_fatigue_syndrome_in_Chinese_middle_school.37.aspx (Full article)

Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences

Abstract:

Experiences of parents who care for sons or daughters with severe myalgic encephalomyelitis are rarely discussed within the literature. Narratives of parent-carers in Lost Voices from a Hidden Illness were analyzed using interpretative phenomenological analysis. This study aimed to give voices to those who care for individuals with myalgic encephalomyelitis and are often stigmatized and inform future research supporting parent-carers. Results included themes of identity change, guilt, feeling like outsiders, uncertainty, changing perceptions of time, coping mechanisms, and improvement/symptom management. Findings could inform the development of carer-focused interventions and provide vital information to health professionals about parent-carers’ lived experience.

Source: Mihelicova M, Siegel Z, Evans M, Brown A, Jason L. Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences. J Health Psychol. 2016 Dec;21(12):2824-2837. Epub 2015 Jun 10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ (Full article)

Measuring School Functioning in Students With Chronic Fatigue Syndrome: A Systematic Review

Abstract:

BACKGROUND: It is often surmised that school functioning is significantly impacted in chronic fatigue syndrome (CFS); however, how this phenomenon manifests itself has rarely been characterized.

METHODS: This systematic review synthesized and critically appraised methods, constructs, and instruments used to assess school functioning in students with CFS. Searches were conducted in electronic databases (CINAHL, MEDLINE, PubMed, ERIC, and PsycINFO) to locate empirical studies that measured school functioning in children and adolescents with CFS.

RESULTS: A total of 36 papers met the inclusion criteria. By far the most commonly reported school functioning construct measured related to school attendance. This was followed by academic functioning, achievement motivation, and educational services received. Little consistency was found in the measurement of these constructs across studies.

CONCLUSIONS: The current review revealed that the school experiences of children and adolescents with CFS have rarely been characterized beyond school absenteeism. Improvements in current assessment methods are required to comprehensively understand the impact of CFS on school functioning. Completely understanding the multiple aspects of school functioning will help to inform targeted strategies to optimize educational outcomes for students with CFS.

© 2018, American School Health Association.

Source: Tollit M, Politis J, Knight S. Measuring School Functioning in Students With Chronic Fatigue Syndrome: A Systematic Review. J Sch Health. 2018 Jan;88(1):74-89. doi: 10.1111/josh.12580. https://www.ncbi.nlm.nih.gov/pubmed/29224219

Transforming growth factor beta (TGF-β) in adolescent chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a prevalent and disabling condition among adolescent. The disease mechanisms are unknown. Previous studies have suggested elevated plasma levels of several cytokines, but a recent meta-analysis of 38 articles found that of 77 different cytokines measured in plasma, transforming growth factor beta (TGF-β) was the only one that was elevated in patients compared to controls in a sufficient number of articles. In the present study we therefore compared the plasma levels of the three TGF-β isoforms in adolescent CFS patients and healthy controls. In addition, the study explored associations between TGF-β levels, neuroendocrine markers, clinical markers and differentially expressed genes within the CFS group.

METHODS: CFS patients aged 12-18 years (n = 120) were recruited nation-wide to a single referral center as part of the NorCAPITAL project (ClinicalTrials ID: NCT01040429). A broad case definition of CFS was applied, requiring 3 months of unexplained, disabling chronic/relapsing fatigue of new onset, whereas no accompanying symptoms were necessary. Healthy controls (n = 68) were recruited from local schools. The three isoforms of TGF-β (TGF-β1, TGF-β2, TGF-β3) were assayed using multiplex technology. Neuroendocrine markers encompassed plasma and urine levels of catecholamines and cortisol, as well as heart rate variability indices. Clinical markers consisted of questionnaire scores for symptoms of post-exertional malaise, inflammation, fatigue, depression and trait anxiety, as well as activity recordings. Whole blood gene expression was assessed by RNA sequencing in a subgroup of patients (n = 29) and controls (n = 18).

RESULTS: Plasma levels of all three isoforms of TGF-β were equal in the CFS patients and the healthy controls. Subgrouping according to the Fukuda and Canada 2003 criteria of CFS did not reveal differential results. Within the CFS group, all isoforms of TGF-β were associated with plasma cortisol, urine norepinephrine and urine epinephrine, and this association pattern was related to fatigue score. Also, TGF-β3 was related to expression of the B cell annotated genes TNFRSF13C and CXCR5.

CONCLUSIONS: Plasma levels of all TGF-β isoforms were not altered in adolescent CFS. However, the TGF-β isoforms were associated with neuroendocrine markers, an association related to fatigue score. Furthermore, TGF-β3 might partly mediate an association between plasma cortisol and B cell gene expression. Trial registration Clinical Trials NCT01040429.

Source: Wyller VB, Nguyen CB, Ludviksen JA, Mollnes TE. Transforming growth factor beta (TGF-β) in adolescent chronic fatigue syndrome. J Transl Med. 2017 Dec 4;15(1):245. doi: 10.1186/s12967-017-1350-1. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-017-1350-1 (Full article)

The presence of co-morbid mental health problems in a cohort of adolescents with chronic fatigue syndrome

Abstract:

OBJECTIVE: To report on the prevalence of mental health disorders in adolescents with chronic fatigue syndrome(CFS) and to compare the diagnoses identified by a brief clinician-administered psychiatric interview with self-report screening questionnaires.

DESIGN: Cross-sectional study.

SETTING: Consecutive attenders to specialist CFS clinics in the United Kingdom.

PATIENTS: N = 52 adolescents, age 12-18 years with CFS.

MEASURES: Self-report questionnaires and a brief structured psychiatric diagnostic interview, administered by a researcher.

RESULTS: On the psychiatric interview, 34.6% met a diagnosis of major depressive disorder and 28.8% had an anxiety disorder. Of these, 15% had co-morbid anxiety and depression. Those with a depression diagnosis reported significantly greater interference on the school and social adjustment scale. They also scored significantly higher on trait anxiety, but not on state anxiety. There were no differences between those who had an anxiety disorder and those who did not on fatigue, disability or depressive symptoms. Children’s Depression Inventory (CDI) score was associated with a depression diagnosis on the psychiatric interview. However, neither the state nor the trait subscale of the State-Trait Anxiety Inventory (STAI) was associated with an anxiety diagnosis.

CONCLUSION: Clinicians should assess for the presence of anxiety and depressive disorders in adolescents with CFS using a validated psychiatric interview. Treatment should be flexible enough to accommodate fatigue, depression and anxiety. Transdiagnostic approaches may suit this purpose. Goals should include pleasurable activities particularly for those who are depressed.

Source: Loades ME, Rimes KA, Ali S, Lievesley K, Chalder T. The presence of co-morbid mental health problems in a cohort of adolescents with chronic fatigue syndrome. Clin Child Psychol Psychiatry. 2017 Oct 1:1359104517736357. doi: 10.1177/1359104517736357. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29096528

Altered right anterior insular connectivity and loss of associated functions in adolescent chronic fatigue syndrome

Abstract:

Impairments in cognition, pain intolerance, and physical inactivity characterize adolescent chronic fatigue syndrome (CFS), yet little is known about its neurobiology. The right dorsal anterior insular (dAI) connectivity of the salience network provides a motivational context to stimuli. In this study, we examined regional functional connectivity (FC) patterns of the right dAI in adolescent CFS patients and healthy participants.

Eighteen adolescent patients with CFS and 18 aged-matched healthy adolescent control participants underwent resting-state functional magnetic resonance imaging. The right dAI region of interest was examined in a seed-to-voxel resting-state FC analysis using SPM and CONN toolbox. Relative to healthy adolescents, CFS patients demonstrated reduced FC of the right dAI to the right posterior parietal cortex (PPC) node of the central executive network. The decreased FC of the right dAI-PPC might indicate impaired cognitive control development in adolescent CFS. Immature FC of the right dAI-PPC in patients also lacked associations with three known functional domains: cognition, pain and physical activity, which were observed in the healthy group. These results suggest a distinct biological signature of adolescent CFS and might represent a fundamental role of the dAI in motivated behavior.

Source: Wortinger LA, Glenne Øie M, Endestad T, Bruun Wyller V. Altered right anterior insular connectivity and loss of associated functions in adolescent chronic fatigue syndrome. PLoS One. 2017 Sep 7;12(9):e0184325. doi: 10.1371/journal.pone.0184325. ECollection 2017. https://www.ncbi.nlm.nih.gov/pubmed/28880891

What treatments work for anxiety in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)? Systematic review

Abstract:

OBJECTIVES: Anxiety is more prevalent in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) than in the general population. A systematic review was carried out to identify which treatment methods are most effective for children with CFS and anxiety.

DESIGN: Systematic review using search terms entered into the Cochrane library and Ovid to search the databases Medline, Embase and psychINFO.

PARTICIPANTS: Studies were selected if participants were <18 years old, diagnosed with CFS/ME (using US Centers for Disease Control and Prevention, the National Institute for Health and Care Excellence or Oxford criteria) and had a valid assessment of anxiety.

INTERVENTIONS: We included observational studies and randomised controlled trials.

COMPARISON: Any or none.

OUTCOMES: Change in anxiety diagnostic status and/or change in anxiety severity on a validated measure of anxiety from pretreatment to post-treatment.

RESULTS: The review identified nine papers from eight studies that met the inclusion criteria. None of the studies specifically targeted anxiety but six studies tested an intervention and measured anxiety as a secondary outcome. Of these studies, four used a cognitive behavioural therapy (CBT)-type approach to treat CFS/ME, one used a behavioural approach and one compared a drug treatment, gammaglobulin with a placebo. Three of the CBT-type studies described an improvement in anxiety as did the trial of gammaglobulin. As none of the studies stratified outcomes according to anxiety diagnostic status or severity, we were unable to determine whether anxiety changed prognosis or whether treatments were equally effective in those with comorbid anxiety compared with those without.

CONCLUSION: We do not know what treatment should be offered for children with both anxiety and CFS/ME. Further research is therefore required to answer this question.

TRIAL REGISTRATION NUMBER: This review was registered on Prospective Register of Systematic Review Protocols (PROSPERO) and the protocol is available from http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42016043488.

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Source: Stoll SVE, Crawley E, Richards V, Lal N, Brigden A, Loades ME. What treatments work for anxiety in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)? Systematic review. BMJ Open. 2017 Sep 5;7(9):e015481. doi: 10.1136/bmjopen-2016-015481. https://www.ncbi.nlm.nih.gov/pubmed/28877941

Sleep Quality in Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Abstract:

STUDY OBJECTIVES: Little is known about the type and severity of sleep disturbances in the pediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) population, compared with healthy adolescents. Using a range of objective and subjective measures, the aim of this study was to investigate sleep quality, the relationship between objective and subjective measures of sleep quality, and their associations with anxiety in adolescents with CFS/ME compared with healthy controls.

METHODS: Twenty-one adolescents with CFS/ME aged 13 to 18 years (mean age 15.57 ± 1.40), and 145 healthy adolescents aged 13 to 18 years (mean age 16.2 ± 1.00) wore actigraphy watches continuously for 2 weeks to collect a number of objective sleep variables. The Pittsburgh Sleep Quality Index was used to obtain a subjective measure of sleep quality. Anxiety was measured by the Spence Children’s Anxiety scale.

RESULTS: On average over the 2-week period, adolescents with CFS/ME were found to have (1) significantly longer objective sleep onset latency, time in bed, total sleep time, and a later rise time (all P< .005), and (2) significantly poorer subjective sleep quality (P< .001), compared with healthy adolescents. The CFS/ME patient group displayed higher levels of anxiety (P< .05), and in both groups, higher levels of anxiety were significantly related to poorer subjective sleep quality (P< .001).

CONCLUSIONS: This study provides objective and subjective evidence of sleep disturbance in adolescents with CFS/ME compared with healthy adolescent controls.

Source: Josev EK, Jackson ML, Bei B, Trinder J, Harvey A, Clarke C, Snodgrass K, Scheinberg A, Knight SJ. Sleep Quality in Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). J Clin Sleep Med. 2017 Jul 28. pii: jc-17-00047. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/28760189