Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome

Burgess, Mary; Lievesley, Kate; Ali, Sheila; Chalder, Trudie

doi:10.1177/1359104518794764

Cited by 8 publications

(15 citation statements)

References 36 publications

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“…The authors suggested that a strong therapeutic relationship with the patient and family was key to the treatment's positive outcome. Following on from this promising case report, a case-series found that a small group of adolescents (n = 6) who received home-based family-focused CBT recovered, and that gains were maintained at follow-up (Burgess et al, 2018). Of course further research on treatment effectiveness is needed, in a controlled setting and on a larger scale.…”

Section: Discussionmentioning

confidence: 93%

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study

et al. 2019

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This mixed-methods study investigated factors associated with fatigue, disability and school attendance in young people with severe CFS/ME. Participants' illness experiences were also explored. Questionnaires were completed at baseline (T1) and approximately 5 months later (T2). There were 51 participants aged between 12 and 25, with a mean age of 18.8 years (SD 3.4). At T1, participants reported severe fatigue and poor social adjustment. Stronger fear avoidance beliefs at T1 were associated with higher fatigue at T2, and with worse social adjustment at T1 and T2. Female gender was associated with lower work/school attendance at T1 and T2 but not with higher fatigue or worse social adjustment. Having accessed treatment was associated with reporting lower levels of work/school attendance at T1 and T2. Multivariate analyses of key outcomes identified significant associations between stronger fear avoidance beliefs and worse social adjustment at T2, and between female gender and lower work/school attendance at T2. It was clear from the qualitative data that severe CFS/ME negatively impacted on many aspects of young people's lives. Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.

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Section: Discussionmentioning

confidence: 93%

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study

et al. 2019

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“…The timing of the illness appears to have importance. When illness occurs at a young age, school attendance is reduced, seriously affecting intellectual and social development [16,44]. This is illustrated by Helen and to some extent David, who continued to be dependent on their parents, who were their carers into adulthood.…”

Section: Discussionmentioning

confidence: 99%

“…Quantitative and qualitative data are limited due to the hard to reach nature of the severely affected CFS/ME population. However, this is slowly changing, and texture is being added to the objective evidence published [15][16][17][18]. In recent years, more qualitative research has been performed with the CFS/ME population.…”

Section: Introductionmentioning

confidence: 99%

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

2021

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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a rare disease with no known etiology. It affects 0.4% of the population, 25% of which experience the severe and very severe categories; these are defined as being wheelchair-, house-, and bed-bound. Currently, the absence of biomarkers necessitates a diagnosis by exclusion, which can create stigma around the illness. Very little research has been conducted with the partly defined severe and very severe categories of CFS/ME. This is in part because the significant health burdens experienced by these people create difficulties engaging in research and healthcare provision as it is currently delivered. This qualitative study explores the experiences of five individuals living with CFS/ME in its most severe form through semi-structured interviews. A six-phase themed analysis was performed using interview transcripts, which included identifying, analysing, and reporting patterns amongst the interviews. Inductive analysis was performed, coding the data without trying to fit it into a pre-existing framework or pre-conception, allowing the personal experiences of the five individuals to be expressed freely. Overarching themes of ‘Lived Experience’, ‘Challenges to daily life’, and ‘Management of the condition’ were identified. These themes highlight factors that place people at greater risk of experiencing the more severe presentation of CFS/ME. It is hoped that these insights will allow research and clinical communities to engage more effectively with the severely affected CFS/ME population.

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“…Although a variety of management strategies such as adaptive pacing, graded exercise, cognitive behavior therapy can be helpful (14), the specifics of what this entails and whether it is implemented as an individualized program is often not clear. However, Burgess et al (52) found a family focused individualized home based rehabilitation program was well received for those with severe CFS. Evidence for significant improvement is hampered by difficulties in comparing outcome measures according to clinical presentation, patient characteristics, case criteria and degree of disability (16).…”

Section: Discussionmentioning

confidence: 99%

Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service

Rowe

2019

Front. Pediatr.

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Aim: To determine the reported duration of illness, the functional and educational long-term outcomes, predictive factors for recovery and seek feedback regarding management in pediatric/adolescent myalgic encepahalomyelitis/chronic fatigue syndrome (ME/CFS). Methods: A cohort observational study of 784 young people, mean age 14.6 (6–18) years, with ME/CFS diagnosed at a specialist pediatric hospital and receiving regular care, was conducted with follow-up for a mean 8 (range 1–21) years after onset. Baseline symptoms, history, depression and anxiety questionnaires were available from 418. The remaining 366, did not have similar standardized baseline information. Questionnaires requested functional rating, persistent symptoms, duration of illness if “recovered,” social engagement and school/work attendance. Feedback was sought regarding management, support services, useful information, helpful interventions or personnel and use of alternative therapies. Reported recovery and function were compared with baseline information and between the two groups. Results: Follow-up data were returned from 81.8%. There was no significant difference in functional score (if reported recovery) or illness duration related to provision of baseline data. The mean duration of illness was 5 (range 1–15) years in the 50% who reported recovery. By 5 years 38% and by 10 years 68% reported recovery. At 10 years the mean functional score was 8/10 (range 2–10) with 5% scoring <6. Depression, anxiety or severity of illness at diagnosis was not predictive of non-recovery. Designing and monitoring their own management plan that included educational, social, physical and enjoyable activities, as well as having symptom management and understanding professionals were highly valued. However, remaining engaged in an education system that flexibly accommodated their illness and aspirations was consistently reported as crucial for long term functioning. Conclusions: ME/CFS in young people has a mean duration of 5 years (1–15) with 68% reporting recovery by 10 years. All improved functionally with 5% remaining very unwell and a further 20% significantly unwell. There were no obvious baseline predictors for recovery. However, depression, anxiety, orthostatic intolerance and to a lesser extent pain at follow up were identified as hampering recovery or function. Supportive professionals, remaining engaged in education and management strategies were identified as helpful.

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Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome

Cited by 8 publications

References 36 publications

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service

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