Category: Pediatric ME/CFS

“it’s a medical condition … you need to support as much as possible”: a qualitative analysis of teachers’ experiences of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME)

Editor’s note: Both CBT and graded exercise are recommended in this study.

Abstract:

Background: An increasing number of children with complex health needs are being educated in mainstream classes. CFS/ME is a complex and disabling condition, and there is little guidance on how primary school teachers can support younger children with this condition. To improve care, it is important to understand what these children need in the school setting, and the barriers and facilitators to teachers providing this support. The aims for this qualitative study were to explore teachers’ views about CFS/ME, their experiences of supporting a pupil with CFS/ME and their perspectives on the barriers and facilitators to providing support.

Methods: We recruited families from an NHS specialist paediatric CFS/ME service and families were eligible if the child was aged between 5 and 11 years and had a diagnosis of CFS/ME. We gained written consent/assent from families to invite the child’s teacher to participate in a qualitative interview. We contacted these teachers, gained written consent and then carried out semi-structured qualitative interviews. Interviews were audio-recorded, transcribed, anonymised and analysed thematically. Interviews took place between July 2018 and December 2018.

Results: We interviewed 11 teachers; their pupil’s age ranged from 5 to 11 years and school attendance ranged from 0 to 80%. Theme 1: Most teachers provided rich descriptions of their pupil’s CFS/ME; they consistently described cognitive dysfunction and significant fatigue, but beyond this the symptoms varied from one account to the next (from mobility problems, to aches and pains, digestive problems, headaches, nausea and hypersensitivity). These teachers noted the ripple effects on their pupil’s social, emotional and academic functioning. Two of the eleven teachers said that they did not observe symptoms of CFS/ME, expressing a degree of scepticism about the diagnosis. Theme 2: Teachers described a close relationship with their pupil. They said they understood the individual needs of the child and portrayed positive and proactive attitudes towards providing support. The type of support provided included facilitating rest breaks and limiting strenuous activities; using practical strategies to address cognitive, physical, social and emotional difficulties; maintaining a connection with the child during their absences from school; and encouraging the child to talk about their health and wellbeing. Teachers noted that receiving formal confirmation of the child’s diagnosis enabled them to put this support in place. Theme 3: The adaptations they described were often intuitive, rather than being based on a knowledge of CFS/ME. Teachers wanted more resources to increase their understanding of the condition and its management.

Conclusions: Primary school teachers want to provide effective support for children with CFS/ME. Clinical services should consider working in collaboration with teachers to equip them with evidence-based strategies for CFS/ME management in the primary school setting.

Source: Brigden A, Shaw A, Crawley E. “it’s a medical condition … you need to support as much as possible”: a qualitative analysis of teachers’ experiences of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME). BMC Pediatr. 2021 Jan 4;21(1):6. doi: 10.1186/s12887-020-02461-7. PMID: 33397331; PMCID: PMC7780629. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7780629/ (Full text)

Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: A qualitative study

Abstract:

Treatments for paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have not been designed or evaluated for younger children (5-11-years). The development of a complex intervention for this population requires an in-depth understanding of the perspectives and psychosocial context of children and families. Children with CFS/ME (5-11-years) and their families were recruited from a specialist CFS/ME service, and interviewed using semi-structured topic guides. Data were analysed thematically. Twenty-two participants were interviewed; eight parents, two children (aged nine and ten) and six parent-child dyads (aged 5-11-years).

Theme 1: CFS/ME in younger children is complex and disabling. Theme 2: Children aged eight and over (in comparison to those under eight) were more able to describe their illness, engage in clinical consultation, understand diagnosis and self-manage. Theme 3: Parents of children under eight took full responsibility for their child’s treatment. As children got older, this increasingly became a joint effort between the parent and child. Parents felt unsupported in their caring role. Clinicians should consider different treatment approaches for children under eight, focusing on: parent-only clinical sessions, training parents to deliver treatment, and increasing support for parents. Children over eight may benefit from tools to help them understand diagnosis, treatment and aids for self-management.

Source: Brigden A, Shaw A, Anderson E, Crawley E. Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: A qualitative study. Clin Child Psychol Psychiatry. 2020 Oct 22:1359104520964528. doi: 10.1177/1359104520964528. Epub ahead of print. PMID: 33092395. https://pubmed.ncbi.nlm.nih.gov/33092395/

Pain in adolescent chronic fatigue following Epstein-Barr virus infection

Abstract:

Objectives: Acute Epstein-Barr virus (EBV) infection is a trigger of Chronic Fatigue (CF) and Chronic Fatigue Syndrome (CFS). The aim of this cross-sectional study was to investigate pain symptoms and pressure pain thresholds in fatigued and non-fatigued adolescents six months after acute EBV-infection, and in healthy controls. This study is part of the CEBA-project (CF following acute EBV infection in adolescents).

Methods: A total of 195 adolescents (12-20 years old) that had undergone an acute EBV infection six months prior to assessment were divided into fatigued (EBV CF+) and non-fatigued (EBV CF-) cases based on questionnaire score. The EBV CF+ cases were further sub-divided according to case definitions of CFS. In addition, a group of seventy healthy controls was included. Symptoms were mapped with questionnaires. Pressure pain thresholds were measured through pressure algometry. One way ANOVA were used for between-group analyses. Linear regression analyses were used to explore associations between Pediatric Quality of Life (dependent variable), pain symptoms and other variables within the EBV (CF+) group.

Results: The EBV CF+ group had significantly higher scores for pain symptoms as compared with the EBV CF- group and healthy controls, but pressure pain threshold did not differ significantly. The number of pain symptoms as well as pain severity were strongly and independently associated with quality of life.

Conclusions: CF and CFS following acute EBV-infection in adolescents is characterized by high pain symptom burden, which in turn is associated with a decline in quality of life. Pain in CF and CFS is of considerable clinical importance, and should be a focal point for further investigation and intervention in these patient groups.

Source: Brodwall EM, Pedersen M, Asprusten TT, Wyller VBB. Pain in adolescent chronic fatigue following Epstein-Barr virus infection [published online ahead of print, 2020 Sep 7]. Scand J Pain. 2020;/j/sjpain.ahead-of-print/sjpain-2020-0031/sjpain-2020-0031.xml. doi:10.1515/sjpain-2020-0031  https://pubmed.ncbi.nlm.nih.gov/32892183/

Chronic Fatigue Syndrome: An Evaluation of a Community Based Management Programme for Adolescents and their Families

Abstract:

Background: Young people with chronic fatigue syndrome (CFS), families and clinicians may differ in their attributions about CFS and consequently in their approach to treatment. Research that clarifies the best treatment approaches is clearly needed. We have sought to develop a model that engages young people and their families in a collaborative way. The approach adopts an optimistic and holistic stance using an active rehabilitation model paying attention to the integrated nature of the physiological and psychological aspects of the illness.

Method: This small study set out to evaluate this approach from a service user perspective. Semi-structured interviews were carried out with young people and their parents separately in order to elicit their views on key treatment elements and their perceived degree of recovery.

Results: Improvements are indicated in all key areas addressed and qualitative information suggests that families value this approach.

Conclusion: Further research is needed to address treatment issues for families who choose not to opt into the service model.

Source: Ashby B, Wright B, Jordan J. Chronic Fatigue Syndrome: An Evaluation of a Community Based Management Programme for Adolescents and their Families. Child Adolesc Ment Health. 2006;11(1):13-18. doi:10.1111/j.1475-3588.2005.00383.x https://pubmed.ncbi.nlm.nih.gov/32811062/

Illness Beliefs in Chronic Fatigue Syndrome: A Study Involving Affected Adolescents and their Parents

Abstract:

Background: The aim of the study was too investigate the beliefs of young people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and their parents, about illness causes and management.

Method: Twenty-one young people with CFS/ME and their parents participated in an open-ended interview.

Results: Infective causes were identified by the majority of respondents, and psychological ones by a minority. Many highlighted reducing activity and resting in symptom management. Positive and negative experiences of psychiatric and psychological treatments were recorded.

Conclusion: Professionals should carefully explore the illness related beliefs of young people with CFS/ME and parental beliefs in order to agree treatment plans.

Source: Richards J, Chaplin R, Starkey C, Turk J. Illness Beliefs in Chronic Fatigue Syndrome: A Study Involving Affected Adolescents and their Parents. Child Adolesc Ment Health. 2006;11(4):198-203. doi:10.1111/j.1475-3588.2006.00409.x https://pubmed.ncbi.nlm.nih.gov/32810979/

Activity measurement in pediatric chronic fatigue syndrome

Abstract:

Objectives: Individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) experience debilitating symptoms, including post-exertional malaise, an intensification of symptoms after physical or cognitive exertion. Previous studies found differences in the activity levels and patterns of activity among individuals with ME and CFS, compared to healthy controls; however, limited research exists on the activity levels of pediatric patients. The objective of this study was to examine differences in activity between healthy children and youth with ME and CFS.

Methods: The present study examines the objective (i.e., ActiGraphy) and self-reported levels of activity among children (ages 5 to 17) enrolled in a community-based study of pediatric CFS.

Results: Children with ME and CFS evidenced lower activity levels than healthy control children. Moreover, participants with ME and CFS evidenced increased nighttime activity and delayed initiation of daytime activity. Participants’ self-reported activity data significantly correlated with their ActiGraph data, suggesting that children with ME and CFS are able to accurately describe their activity level.

Discussion: This study highlights differences in activity level and diurnal/nocturnal activity patterns between healthy children and those with ME and CFS. These differences should be considered in identifying appropriate supports and accommodations for children with ME and CFS.

Source: Loiacono B, Sunnquist M, Nicholson L, Jason LA. Activity measurement in pediatric chronic fatigue syndrome [published online ahead of print, 2020 Aug 17]. Chronic Illn. 2020;1742395320949613. doi:10.1177/1742395320949613 https://pubmed.ncbi.nlm.nih.gov/32806955/

Severe ME in Children

Abstract:

A current problem regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases.

This author has personal experience of managing and advising on numerous cases of severe paediatric ME, and offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.

Source: Speight N. Severe ME in Children. Healthcare (Basel). 2020;8(3):E211. Published 2020 Jul 14. doi:10.3390/healthcare8030211 https://www.mdpi.com/2227-9032/8/3/211/htm (Full text)

The Relationship Between Childhood Trauma and the Response to Group Cognitive-Behavioural Therapy for Chronic Fatigue Syndrome

Abstract:

Objective: To examine the relationship between childhood trauma and the response to group cognitive-behavioural therapy (GCBT) for chronic fatigue syndrome (CFS).

Methods: A single cohort study conducted in an outpatient university referral center for CFS including a well-documented sample of adult patients meeting the CDC criteria for CFS and having received 9 to 12 months of GCBT. A mixed effect model was adopted to examine the impact of childhood trauma on the treatment response in general and over time. The main outcome measures were changes in fatigue, as assessed with the Checklist Individual Strength (total score), and physical functioning, as gauged with the Short Form 36 Health Survey subscale, with the scales being completed at baseline, immediately after treatment completion and after 1 year.

Results: We included 105 patients with CFS. Childhood trauma was not significantly associated with the response to GCBT over time on level of fatigue or physical functioning.

Conclusion: Childhood trauma does not seem to have an effect on the treatment response to dedicated GCBT for CFS sufferers over time. Therefore, in the allocation of patients to this kind of treatment, a history of childhood trauma should not be seen as prohibitive.

Source: De Venter M, Illegems J, Van Royen R, Sabbe BGC, Moorkens G, Van Den Eede F. The Relationship Between Childhood Trauma and the Response to Group Cognitive-Behavioural Therapy for Chronic Fatigue Syndrome. Front Psychiatry. 2020;11:536. Published 2020 Jun 12. doi:10.3389/fpsyt.2020.00536 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7304305/ (Full text)

“The Child’s Got a Complete Circle Around Him”. The Care of Younger Children (5-11 Years) With CFS/ME. A Qualitative Study Comparing Families’, Teachers’ and Clinicians’ Perspectives’

Abstract:

Society needs to improve the care of children with complex needs. Guidelines recommend integrating care across health and educational settings, however, there is little research on whether this is achieved or how this can be done in practice. Our aim was to address this gap by examining how the care of children (aged 5-11 years) with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is shared across home, education and health settings, in order to generate recommendations for integrating care.

We undertook semi-structured interviews with families (22 participants), teachers (11 participants) and healthcare providers (9 participants), analysing the data thematically and comparatively. Our analysis of the data was informed by a socio-ecological perspective as we sought to understand the complexity of the relationships and systems around the child. The first theme focuses on the child (“individual level”); child-centred care is seen as essential whilst acknowledging that the child has limited capacity to manage their own care. The second theme presents the distinct roles of parents, teachers and clinicians (“interpersonal and organisational levels”). The third describes how these three levels interact in the management of the child’s care, in the context of the health and education systems and policies (“policy levels”). The fourth explores optimal ways to integrate care across home, school and clinical settings.

In conclusion, there is opportunity to support a child with complex health needs by targeting the systems around the child; parents, teachers and clinicians, as well as education and health policy that can enable shared-care. Involving schools in assessment, communicating diagnosis across settings and using a stepped-care approach to integrated care may be beneficial. Further work is needed to explore these recommendations, with attention to the policy factors that may act as barriers and enablers.

Source: Brigden A, Shaw A, Barnes R, Anderson E, Crawley E. “The child’s got a complete circle around him”. The care of younger children (5-11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’ [published online ahead of print, 2020 Jun 9]. Health Soc Care Community. 2020;10.1111/hsc.13029. doi:10.1111/hsc.13029 https://pubmed.ncbi.nlm.nih.gov/32519359/

Health-related Quality of Life in Norwegian Adolescents Living With Chronic Fatigue Syndrome

Abstract:

Purpose: The primary aim was to measure health related quality of life (HRQoL) in a Norwegian cohort of adolescents with Chronic Fatigue Syndrome (CFS/ME). A secondary aim was to identify factors before diagnosis, at time of diagnosis and after diagnosis that were associated with HRQoL.

Methods: In this cross-sectional population-based study, HRQoL was measured by Pediatric Quality of Life Inventory™ Generic Core scale version 4.0 (PedsQL4.0) in 63 adolescents with CFS/ME. In addition, fatigue was measured by PedsQL Multidimensional Fatigue scale (PedsQL-MFS), depressive symptoms were measured by the Short Mood and Feelings Questionnaire (SMFQ), and disruption in school activities was measured by The De Paul Pediatric Health Questionnaire (DPHQ-N). Data were also collected from medical records and patient interviews.

Results: Age at diagnosis was 15 (2) years (mean (SD)), and four out of five participants were female. Time from diagnosis to reply was 39 (22) months. Adolescents with CFS/ME reported PedsQL4.0 score 50 (17), and boys reported a better score than girls (64 vs 47, 95% Confidence Interval (CI) for difference (- 27; – 6)). There were positive associations between overall HRQoL and support from a schoolteacher, school attendance or participation in leisure activities. There were negative associations between overall HRQoL and delayed school progression, having been to rehabilitation stay and depressive symptoms.

Conclusion: HRQoL in adolescents diagnosed with CFS/ME was low. The associations between reported HRQoL, healthcare previously provided, support from a schoolteacher, school attendance and participation in leisure activity may provide information of value when developing refined strategies for healthcare among adolescents with CFS/ME. Possible causal relationships must however be explored in future studies.

Source: Similä WA, Halsteinli V, Helland IB, Suvatne C, Elmi H, Rø TB. Health-related quality of life in Norwegian adolescents living with chronic fatigue syndrome. Health Qual Life Outcomes. 2020;18(1):170. Published 2020 Jun 5. doi:10.1186/s12955-020-01430-z https://hqlo.biomedcentral.com/articles/10.1186/s12955-020-01430-z (Full text)