Tag: children

Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study

Abstract:

Background: Moderate to severe pain affects up to two-thirds of children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and is associated with worse fatigue and physical functioning. This research aims to gain a greater insight into pain experienced by these children.

Methods: Thematic analysis of qualitative data from semistructured interviews with 13 children with CFS/ME (mean age=15.3 years, 67% female) was completed.

Results: Thematic analysis enabled construction of three themes: children’s wide-ranging experiences of pain, negative impact of pain and lack of effective treatment for pain and nine subthemes. The first theme demonstrated highly varied pain experiences, ranging from ‘like [being]… on fire’, like ‘being stabbed’ to ‘like…lead’. Children experienced pain in multiple sites and with wide-ranging frequency and severity. The second theme highlighted the profound negative impact of pain on multiple aspects of children’s lives. Physical activity was severely impaired; some children ‘couldn’t leave bed’ or ‘couldn’t…brush [their] own hair’. Abdominal pain meant some would ‘go…days without eating’. Pain substantially impacted on mental health, leaving children feeling ‘agitated’, experiencing ‘really bad panic attacks’ or making them ‘[want to] breakdown’. Children felt they ‘can’t do the things that everyone else can do’, had ‘missed out’ and are ‘behind everyone’. Some avoided socialising as they ‘don’t want to stop everyone else’. The final theme demonstrates the absence of adequate treatment for pain, with participants reporting ‘nothing has ever really got rid of it’ and only ‘slightly [takes] the edge off’ and other experiencing side effects.

Conclusions: Pain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.

Source: Serafimova T, Ascough C, Parslow RM, Crawley E. Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study. BMJ Paediatr Open. 2022 Feb;6(1):e001201. doi: 10.1136/bmjpo-2021-001201. Epub 2022 Feb 15. PMID: 36053633. https://bmjpaedsopen.bmj.com/content/6/1/e001201 (Full text)

Long-COVID in immunocompromised children

Abstract:

Coronavirus disease 2019 (COVID-19) can lead to an illness characterized by persistent symptoms which affect various organs and systems, known as long-COVID. This study aimed to assess the prevalence and clinical characteristics of long-COVID in children with immunodeficiency, in comparison to those without. A self-constructed questionnaire was created, which included questions regarding the child’s general health, the course of their COVID-19, their symptoms of long-COVID and its impact on their daily functioning, the diagnosis of multisystem inflammatory syndrome (MIS-C), and vaccination status. The questionnaire was completed by parents of 147 children – 70 children with a diagnosis of immunodeficiency (47.6%) and 77 who were immunocompetent (52.4%).

Immunocompetent children were more significantly affected by long-COVID than those immunocompromised. Its prevalence in the first 12-week post-infection was 60.0% and 35.7% in these groups, respectively. Beyond this period, these percentages had dropped to 34.6% and 11.43%, respectively. Children who were immunocompetent reported more often symptoms of fatigue, reduced exercise tolerance, and difficulty concentrating. Meanwhile, there was a slight increase in complaints of gastrointestinal symptoms in immunocompromised patients. The risk of developing long-COVID increased with age and COVID-19 severity in both groups. Furthermore, the daily activities of immunocompetent children were limited more frequently (41.8%) than for those who were immunocompromised (25%).

Conclusions: Although immunocompromised children experienced long-COVID, its prevalence and impact on daily functioning were significantly lower than among immunocompetent children. However, as the pathomechanisms of long-COVID are not yet fully understood, it is not currently possible to fully explain these findings.

What is known: • Long COVID is characterized by persistent symptoms following COVID-19, which can affect various tissues and organs, as well as mental health. • Due to the similar course of COVID-19 – mainly mild or asymptomatic – among children with and without immunodeficiency, the question arises, over whether the prevalence and severity of long-COVID is also similar in both groups.

What is new: • Immunocompromised children also suffer from long-COVID, but the prevalence is significantly lower than in the immunocompetent group of children. • The potential causes of less frequent and milder long-COVID in this group may be the milder course of COVID-19 and the state of reduced immunity protecting against neuroinflammation.

Source: Kuczborska K, Buda P, Książyk J. Long-COVID in immunocompromised children. Eur J Pediatr. 2022 Jul 14:1–9. doi: 10.1007/s00431-022-04561-1. Epub ahead of print. PMID: 35834042; PMCID: PMC9281224.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9281224/ (Full text)

Cytokine network analysis in a community-based pediatric sample of patients with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Objectives: Studies have demonstrated immune dysfunction in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS); however, evidence is varied. The current study used network analysis to examine relationships between cytokines among a sample of pediatric participants with ME/CFS.

Methods: 10,119 youth aged 5-17 in the Chicagoland area were screened for ME/CFS; 111 subjects and controls were brought in for a physician examination and completed a blood draw. Youth were classified as controls (Cs, N = 43), ME/CFS (N = 23) or severe (S-ME/CFS, N = 45). Patterns of plasma cytokine networks were analyzed.

Results: All participant groups displayed a primary network of interconnected cytokines. In the ME/CFS group, inflammatory cytokines IL-12p70, IL-17A, and IFN-γ were connected and included in the primary membership, suggesting activation of inflammatory mechanisms. The S-ME/CFS group demonstrated a strong relationship between IL-17A and IL-23, a connection associated with chronic inflammation. The relationships of IL-6 and IL-8 in ME/CFS and S-ME/CFS participants also differed from Cs. Together, these results indicate pro-inflammatory responses in our illness populations.

Discussion: Our data imply biological differences between our three participant groups, with ME/CFS and S-ME/CFS participants demonstrating an inflammatory profile. Examining co-expression of cytokines may aid in the identification of a biomarker for pediatric ME/CFS.

Source: Jason LA, Gaglio CL, Furst J, Islam M, Sorenson M, Conroy KE, Katz BZ. Cytokine network analysis in a community-based pediatric sample of patients with myalgic encephalomyelitis/chronic fatigue syndrome. Chronic Illn. 2022 May 16:17423953221101606. doi: 10.1177/17423953221101606. Epub ahead of print. PMID: 35570777.  https://pubmed.ncbi.nlm.nih.gov/35570777/

Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence

Abstract:

Thirteen women (16-30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

Source: Krabbe SH, Mengshoel AM, Schrøder Bjorbækmo W, Sveen U, Groven KS. Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence. Health Care Women Int. 2022 Apr 11:1-23. doi: 10.1080/07399332.2022.2043862. Epub ahead of print. PMID: 35404768.  https://www.tandfonline.com/doi/full/10.1080/07399332.2022.2043862 (Full study)

Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study

Abstract:

Background Moderate to severe pain affects up to two-thirds of children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and is associated with worse fatigue and physical functioning. This research aims to gain a greater insight into pain experienced by these children.

Methods Thematic analysis of qualitative data from semistructured interviews with 13 children with CFS/ME (mean age=15.3 years, 67% female) was completed.

Results Thematic analysis enabled construction of three themes: children’s wide-ranging experiences of pain, negative impact of pain and lack of effective treatment for pain and nine subthemes. The first theme demonstrated highly varied pain experiences, ranging from ‘like [being]… on fire’, like ‘being stabbed’ to ‘like…lead’. Children experienced pain in multiple sites and with wide-ranging frequency and severity. The second theme highlighted the profound negative impact of pain on multiple aspects of children’s lives. Physical activity was severely impaired; some children ‘couldn’t leave bed’ or ‘couldn’t…brush [their] own hair’. Abdominal pain meant some would ‘go…days without eating’. Pain substantially impacted on mental health, leaving children feeling ‘agitated’, experiencing ‘really bad panic attacks’ or making them ‘[want to] breakdown’. Children felt they ‘can’t do the things that everyone else can do’, had ‘missed out’ and are ‘behind everyone’. Some avoided socialising as they ‘don’t want to stop everyone else’. The final theme demonstrates the absence of adequate treatment for pain, with participants reporting ‘nothing has ever really got rid of it’ and only ‘slightly [takes] the edge off’ and other experiencing side effects.

Conclusions Pain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.

Source: Serafimova T, Ascough C, Parslow RM, et al. Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study. BMJ Paediatrics Open 2022;6:e001201. doi: 10.1136/bmjpo-2021-001201 https://bmjpaedsopen.bmj.com/content/6/1/e001201 (Full text)

Saliva Fatigue Biomarker Index As a Marker for Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community Based Sample

Abstract:

Objective: The prevalence of pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically and sociodemographically diverse community-based random sample of 10,119 youth aged 5-17. A team of physicians made a final diagnosis of ME/CFS if the participants met criteria for up to three selected case definitions following medical and psychiatric evaluations. We assessed whether a salivary biomarker of fatigue could identify youth with ME/CFS.

Study design: We examined the ratio of the concentrations of 2 peptide fragments in saliva, referred to as the Fatigue Biomarker Index (FBI), in participants from our study diagnosed with ME/CFS (n=59) and matched controls (n=39).

Results: Significant overall differences were found in the FBI between those participants with severe ME/CFS and those with ME/CFS and the controls.

Conclusions: If confirmed in other populations, the FBI could serve as an objective test to aid in the diagnosis of severe ME/CFS.

Source: Jason LA, Kalns J, Richarte A, Katz BZ, Torres C. Saliva Fatigue Biomarker Index As a Marker for Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community Based Sample. Fatigue. 2021;9(4):189-195. doi: 10.1080/21641846.2021.1994222. Epub 2021 Oct 27. PMID: 35186443; PMCID: PMC8855987.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8855987/ (Full text)

Investigating Access to Specialist Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) Services for Ethnic Minority Children

Abstract:

Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a relatively common, complex and disabling condition. CFS/ME is more common in ethnic minority adults, and is likely to be more common in ethnic minority children, but very few ethnic minority children access specialist CFS/ME services.

The aim of this PhD was to explore both the barriers and facilitators ethnic minority children face in accessing CFS/ME services, with an aim to make access more equal. Different methods were used: 1) systematic review, 2) data analysis, 3) qualitative interviews with young people, parents, community ‘influencers’, healthcare professionals, and 4) focus groups with community members.

I conducted a mapping systematic review to: (1) understand barriers ethnic minority children experience when accessing specialist medical services for chronic or mental healthcare conditions, (2) interventions to improve access. This synthesis describes the most common barrier to be ‘Knowledge’ but ‘Cultural Factors’ and ‘Stigma’ were also important. Interventions that focus on reducing multiple access barriers showed the most promise. This review also highlighted the role of facilitators, which informed the PhD.

Data analysis of the baseline characteristics of children who accessed specialist paediatric CFS/ME services and were recruited into a clinical trial showed only 3.93% of children described themselves as an ethnic minority, however data capture methods suggest ethnicity may not be accurately recorded.

Interviews with 25 participants (3 young people with CFS/ME; 5 family members, 14 community leaders and 3 medical professionals), and focus groups with 23 community participants were conducted and thematic analysis identified multiple barriers to accessing CFS/ME services, with three key barriers (‘Conceptualisation of CFS/ME’; ‘Cultural Factors’; and ‘Going to the Doctors’) and few facilitators. Terminology was also important, with “community leaders” declining the term “leader”.

Participants suggested the following ideas to improve access: 1) knowledge and awareness building initiatives to increase understanding of CFS/ME and reduce stigma and 2) healthcare system improvements, including more General Practitioner (GP) consultations, shorter waiting times, and staff of different ethnicities. Future work is needed to pilot these ideas to improve access and develop interventions.

Source: Catherine Linney Bristol Medical School Student thesis: Doctoral Thesis › Doctor of Philosophy (PhD) https://research-information.bris.ac.uk/en/studentTheses/investigating-access-to-specialist-chronic-fatigue-syndrome-myalg  https://research-information.bris.ac.uk/ws/portalfiles/portal/306612306/REDACTED_Final_Copy_2021_12_02_Linney_C_PhD.pdf (Full text)

What treatments work for anxiety and depression in children and adolescents with chronic fatigue syndrome? An updated systematic review

Abstract:

Objectives: Children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience a higher prevalence of depression and anxiety compared with age-matched controls. Our previous systematic reviews in 2015/16 found little evidence for effective treatment for children with CFS/ME with comorbid depression and/or anxiety. This review updates these findings.

Design: A systematic review. We searched Cochrane library, Medline, Embase and PsycINFO databases from 2015 to 2020. We combined the updated results with our previous reviews in a narrative synthesis.

Participants: Inclusion criteria: <18 years old; diagnosed with CFS/ME (using Centers for Disease Control and Prevention, National Institute for Health and Care Excellence or Oxford criteria); validated measures of depression and/or anxiety.

Interventions: Observational studies or randomised controlled trials.

Comparison: Any or none.

Outcomes: Studies with outcome measures of anxiety, depression or fatigue.

Results: The updated review identified two studies. This brings the total number of paediatric CFS/ME studies with a measure of anxiety and/or depression since 1991 to 16. None of the studies specifically targeted depression, nor anxiety. One new study showed the Lightning Process (in addition to specialist care) was more effective at reducing depressive and anxiety symptoms compared with specialist care alone. Previous studies evaluated cognitive-behavioural therapy (CBT); pharmacological interventions and behavioural approaches. CBT-type interventions had most evidence for improving comorbid anxiety and/or depressive symptoms but varied in delivery and modality. Other interventions showed promise but studies were small and have not been replicated.

Conclusion: Very few paediatric CFS/ME intervention studies have been conducted. This review update does not significantly add to what is known from previous reviews. The evidence is of poor quality and insufficient to conclude which interventions are effective at treating comorbid anxiety and/or depression in paediatric CFS/ME.

Source: Clery P, Royston A, Driver K, Bailey J, Crawley E, Loades M. What treatments work for anxiety and depression in children and adolescents with chronic fatigue syndrome? An updated systematic review. BMJ Open. 2022 Jan 31;12(1):e051358. doi: 10.1136/bmjopen-2021-051358. PMID: 35105619. https://pubmed.ncbi.nlm.nih.gov/35105619/

What treatments work for anxiety and depression in children and adolescents with Chronic Fatigue Syndrome? An updated systematic review

Abstract:

Objectives: Children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) experience a higher prevalence of depression and anxiety compared to age-matched controls. Our previous systematic reviews in 2015/16 found little evidence for effective treatment for children with CFS/ME with comorbid depression and/or anxiety. This review updates these findings.

Design: A systematic review. We searched Cochrane library, Medline, Embase and PsychINFO databases from 2015-2020. We combined the updated results with our previous reviews in a narrative synthesis.

Participants: Inclusion criteria: <18 years old; diagnosed with CFS/ME (using Centre for Disease Control, National Institute for Health and Care Excellence, or Oxford criteria); validated measures of depression and/or anxiety.

Interventions: Observational studies or randomised controlled trials.

Comparison: Any or none.

Outcomes: Studies with outcome measures of anxiety, depression, or fatigue.

Results: The updated review identified two studies. This brings the total number of paediatric CFS/ME studies with a measure of anxiety and/or depression since 1991 to 16. None of the studies specifically targeted depression, nor anxiety. One new study showed the Lightning Process (in addition to specialist care) was more effective at reducing depressive and anxiety symptoms compared to specialist care alone. Previous studies evaluated cognitive behavioural therapy (CBT); pharmacological interventions; and behavioural approaches. CBT-type interventions had most evidence for improving comorbid anxiety and/or depressive symptoms but varied in delivery and modality. Other interventions showed promise but studies were small and have not been replicated.

Conclusion: Very few paediatric CFS/ME intervention studies have been conducted. This review update does not significantly add to what is known from previous reviews. The evidence is of poor quality and insufficient to conclude which interventions are effective at treating comorbid anxiety and/or depression in paediatric CFS/ME.

Source:Clery, P., Royston , A., Driver, K., Bailey, J., Crawley, E. M., & Loades, M. (Accepted/In press). What treatments work for anxiety and depression in children and adolescents with Chronic Fatigue Syndrome? An updated systematic review. BMJ Open. https://research-information.bris.ac.uk/en/publications/what-treatments-work-for-anxiety-and-depression-in-children-and-a

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 study)