school – American ME and CFS Society

Mental health among children with long COVID during the COVID-19 pandemic

Abstract:

A growing number of studies report that persons of all ages, infected with SARS-CoV-2, may experience long-term persistent symptoms, known as long COVID (LC) or post COVID-19 condition. This is one of the first studies examining the consequences of LC on children’s mental health. In this case-control study, we compared select mental health aspects of 103 children diagnosed with LC to a control group of 113 children uninfected with SARS-COV-2; all 4-18 years old. Both groups were assessed via parents’ questionnaires.

In comparison to the control group, children with LC exhibited more memory difficulties. However, no group differences emerged in other functional aspects (connection with friends and engagement in physical activities), problems with concentration, or levels of emotional-behavioral problems (externalizing, internalizing, ADHD, and PTSD symptoms).

We also found that children with LC had greater exposure to COVID-19-related stressors. Higher levels of parental worries regarding their children’s functioning and economic difficulties at home significantly predicted higher levels of children’s emotional-behavioral problems and were better predictors than the child’s age, social functioning, or LC diagnosis.

Conclusion: LC was associated with impairments in some aspects of children’s memory which may relate to academic functioning, but not with higher rates of emotional-behavioral problems, thus warranting interventional programs addressing school functioning and cognitive abilities in this population. Additionally, parents’ economic stress and worries regarding their child’s emotional adjustment during the pandemic, are important factors affecting pandemic-related emotional-behavioral problems among children, regardless of COVID-19 infection, that should be addressed.

What is Known:

• Children may have long COVID (LC) after being infected with SARS-COV-2.

What is New:

• LC may be associated to impairments in some aspects of children’s memory, as reported by parents.

• Parents’ economic stress and worries concerning their children’s emotional adjustment during the pandemic are associated with more distress in their children.

Source: Shachar-Lavie I, Shorer M, Segal H, Fennig S, Ashkenazi-Hoffnung L. Mental health among children with long COVID during the COVID-19 pandemic. Eur J Pediatr. 2023 Feb 14:1–9. doi: 10.1007/s00431-023-04854-z. Epub ahead of print. PMID: 36786887; PMCID: PMC9925927. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9925927/ (Full text)

A narrative inquiry into the school experiences of teenagers living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Abstract:

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex chronic medical condition, affecting up to 2% of secondary school aged children in the UK (Collard & Murphy, 2020). It is an illness that has historically been contested and is widely misunderstood, contributing to negative stereotyping and stigma (Blease et al, 2017). Together with the physical symptoms of a complex illness, this has significant implications for the school experiences of young people with ME/CFS.
Using a social constructionist framework that recognises that knowledge creation is a shared enterprise, this research adopts a social justice perspective, which shapes the entirety of the research process.

Adopting Narrative Inquiry as a methodology, this study explores the stories constructed by three young people with ME/CFS, aged between sixteen and seventeen, in relation to their school experiences. The young people used audio or written diaries to construct their narratives and participate in an optional follow up reflective interview.

The young people’s narratives were analysed using the Listening Guide (Brown & Gilligan, 1993), a ‘Voice Centred Relational Method’, revealing the complex, unique and subjective nature of individual experience. Bronfenbrenner’s ecological systems theory (1979) and Ryan and Deci’s Self-determination theory (2017) were used as explanatory frameworks to illustrate the findings, which indicated that understanding, communication and flexibility of adaptations were key factors shaping the young people’s experiences of school. A model for practice has been created for Educational Psychologists to consider using with schools, in order to identify factors within the young people’s environmental systems that could be addressed to promote a positive school experience.

This dissertation concludes with considerations of how narrative approaches can be used to guide the work of Educational Psychologists. Implications for professional practice have been shared, highlighting the importance of viewing the needs of young people with ME/CFS holistically, and adopting a person-centred approach.

Source: Lewis, Mariana L. A narrative inquiry into the school experiences of teenagers living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Educational Psychology Thesis (DEdPsy). University of Bristol. https://research-information.bris.ac.uk/ws/portalfiles/portal/349168131/Final_Copy_2022_12_06_Lewis_M_L_DEdPsy.pdf (Full text)

The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families

Abstract:

Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a disabling condition. Schools play a key role in adolescents’ experiences with managing ME/CFS. However, little is known about the experiences of adolescents with ME/CFS (and their families) in schools.

This paper is an incidental qualitative study, which combines data from two independent ME/CFS studies: study 1 researched ethnic minority adolescents with ME/CFS; study 2 explored Acceptance and Commitment Therapy for adolescents with ME/CFS who had not recovered after one year. Participants included: adolescents with ME/CFS; their families; and medical professionals (ME/CFS specialists and non-specialists). Adolescents, their families, and ME/CFS medical professionals were recruited from a UK specialist paediatric ME/CFS service. Non-ME/CFS medical professionals were recruited from the same region.

Semi-structured qualitative interviews and focus groups were undertaken. Participants’ views on schools from each study were combined and thematic analysis was used to identify themes. Fifteen adolescents with ME/CFS (11-17 years old), sixteen family members, and ten medical professionals (GPs, school nurses and ME/CFS specialists) were interviewed.

Four key themes were found: (1) adolescents identified school was important for aiding ME/CFS recovery, especially educationally and socially; (2) families described varying levels of support from schools and local authorities with help managing ME/CFS – some described significant practical and emotional difficulties to accessing education, whereas others recounted examples of positive supportive strategies, particularly when teachers had previous experience or knowledge of ME/CFS; (3) parents thought three-way communication between schools, healthcare and families could improve support; (4) participants felt schools were an appropriate place for knowledge building and raising awareness of ME/CFS amongst teachers and pupils, to aid improved supportive measures.

In conclusion, this paper provides rich data that highlights the importance of education and the realistic fears and hurdles for adolescents with ME/CFS remaining engaged in education and the impact on their future. Some families described positive strategies in school, which were viewed as helpful to manage ME/CFS in the classroom. These strategies could be implemented alongside knowledge building initiatives and improved communication between healthcare and education. There is a need to further investigate useful strategies and determine how teachers can be best supported in implementing them.

Source: Clery P, Linney C, Parslow R, Starbuck J, Laffan A, Leveret J, Crawley E. The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families. Health Soc Care Community. 2022 Aug 22. doi: 10.1111/hsc.13942. Epub ahead of print. PMID: 35996850. https://onlinelibrary.wiley.com/doi/10.1111/hsc.13942 (Full text)

Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study

Abstract:

Introduction: Chronic fatigue syndrome (CFS/ME) is a disabling disease severely impacting school attendance, education, and social life in young students. Uncertainties surrounding CFS/ME etiology may impact the interpretation of CFS/ME in schools. Thus, school personnel need information from health care providers to make adequate adaptations to education and social life at school for these students.

Objectives: To explore teachers, counselors, and school nurses’ experiences with adapting education for students with CFS/ME aged 13-19 in secondary and high schools.

Design: A qualitative study with focus group interviews and individual interviews performed face-to-face or digitally between November 2020 and March 2021. Data were analyzed using Systematic text condensation.

Participants: Six teachers, two counselors, and four school nurses in secondary and high school participated.

Results: Adapting education for students with CFS/ME was challenging, especially before the students received a diagnosis. The challenges were related to identifying the students’ adaptational needs, maintaining a teacher-student relationship due to school absence, difficulties in maintaining continuity of education, and uncertainty regarding the diagnosis. Successful adaptations were related to quickly reacting to school absence, early referral to educational, psychological services, a close collaboration with the school management, and the development of digital teaching for students with CFS/ME. Interdisciplinary collaboration and a clear, constructive plan with adaptive measures, including maintained teacher-student communication and educational and social adaptations, may be useful in preventing the losses, young people, with CFS/ME experience.

Conclusion: Early interdisciplinary collaboration to adapt education and social life at school for students with CFS/ME, may support teachers, counselors, and school nurses in their efforts to adapt education and prevent losses related to academic and social development in students with CFS/ME.

Source: Similä WA, Rø TB, Nøst TH. Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study. Front Pediatr. 2021 Nov 11;9:756963. doi: 10.3389/fped.2021.756963. PMID: 34858906; PMCID: PMC8632258. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8632258/ (Full text)

Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study

Abstract:

Objectives: To explore teachers, counselors, and school nurses’ experiences with adapting education for students with CFS/ME aged 13-19 in secondary and high schools.

Participants: Six teachers, two counselors, and four school nurses in secondary and high school participated.

Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study

Abstract:

Objectives: To explore factors perceived as positive or negative among young people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in relation to school and everyday life.

Design: A qualitative study with semistructured individual interviews performed at the local hospital or at the informants’ homes between September 2017 and January 2018, with an additional telephone interview to collect data on experiences from the COVID-19 pandemic, conducted in September 2020. Data were analysed using a grounded theory approach.

Setting: The informants were recruited from two university hospitals that offer interdisciplinary assessments of young people with CFS/ME from various parts of Norway.

Participants: Five males and 13 females aged 13-21 years with CFS/ME diagnosed 3-56 months prior to the interviews participated.

Results: The informants were concerned about a lack of educational adaptations and missed social life at school. Educational and social adaptations could improve schooling and health among young people with CFS/ME. Negative experiences were related to a lack of knowledge about CFS/ME among school personnel and young people’s difficulties to limit activities. Online teaching as experienced during the COVID-19 pandemic was described as positive both for education and social life.

Conclusions: Young people with CFS/ME can benefit from better educational adaptations and increased social interaction with peers. From the participants’ view, factors that limit learning and socialisation include a lack of knowledge about CFS/ME among teachers and school personnel, expectations from teachers of doing more than they could manage at school, feeling alone coping with the disease and not recognising their own limitations regarding what they are able to do. Suggested factors perceived to enhance learning and socialisation were a better understanding of the disease among school personnel and peers, suitable educational adaptations and being able to socialise with peers.

Source: Similä WA, Nøst TH, Helland IB, Rø TB. Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study. BMJ Open. 2021 Nov 18;11(11):e051094. doi: 10.1136/bmjopen-2021-051094. PMID: 34794992. https://pubmed.ncbi.nlm.nih.gov/34794992/

“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)

Assessing functioning in adolescents with chronic fatigue syndrome: psychometric properties and factor structure of the School and Social Adjustment Scale and the Physical Functioning Subscale of the SF36

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) has a major impact on functioning. However, no validated measures of functioning for this population exist.

AIMS: We aimed to establish the psychometric properties of the 5-item School and Social Adjustment Scale (SSAS) and the 10-item Physical Functioning Subscale of the SF-36 in adolescents with CFS.

METHOD: Measures were completed by adolescents with CFS (n = 121).

RESULTS: For the Physical Functioning Subscale, a 2-factor solution provided a close fit to the data. Internal consistency was satisfactory. For the SSAS, a 1-factor solution provided an adequate fit to the data. The internal consistency was satisfactory. Inter-item and item-total correlations did not indicate any problematic items and functioning scores were moderately correlated with other measures of disability, providing evidence of construct validity.

CONCLUSION: Both measures were found to be reliable and valid and provide brief measures for assessing these important outcomes. The Physical Functioning Subscale can be used as two subscales in adolescents with CFS.

Source: Loades ME, Vitoratou S, Rimes KA, Chalder T. Assessing functioning in adolescents with chronic fatigue syndrome: psychometric properties and factor structure of the School and Social Adjustment Scale and the Physical Functioning Subscale of the SF36. Behav Cogn Psychother. 2020 Apr 1:1-11. doi: 10.1017/S1352465820000193. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/32234097

Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician

Introduction:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling, chronic disease characterized by the body’s inability to produce sufficient energy for normal everyday activities. Children with ME/CFS experience debilitating fatigue referred to as post-exertional malaise (PEM) after minimal mental or physical exertion which is not relieved by sleep. It can significantly reduce the ability of the child to take part in personal, educational, or social activities and can compromise executive function, and can result in a moderate to severe disability. As many as 1% of school-age children suffer from this disease in varying degrees of severity, and ME/CFS has been shown to negatively impact school attendance, participation, connectedness, and academic performance (1). Some studies suggest that ME/CFS may be the major cause of extended school absences (2).

Whereas, the literature supplying practice-based guidance for other chronic conditions affecting children in school, such as Autism and Attention Deficit Hyperactivity Disorder (ADHD) will be found in educational journals, very little guidance for students with ME/CFS appears in the clinical medicine literature. Although school nurses are beginning to play a larger role in supporting these children, physicians or healthcare providers retain primary responsibility of informing the school system of the needed adjustments for the young ME/CFS patient to succeed in the school environment.

This article argues that the physician has a much broader responsibility to provide diagnostic, symptomatic, and treatment information about ME/CFS than they would with other conditions such as Autism or ADHD that qualify students for special services. For students with ME/CFS, the physician’s letter required in the school’s evaluation process is a critical resource to advise and guide education professionals regarding appropriate student placement, classroom support, and instructional accommodations or modifications. The specifics of what should be included in a model physician’s letter are included.

Source: Newton, Faith R. “Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician.” Frontiers in pediatrics vol. 7 104. 2 Apr. 2019, doi:10.3389/fped.2019.00104 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6455006/ (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.

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