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

Abstract

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.

Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study

“…Unlike previous studies [6,31,62,66], we did not find higher rates of depression in adolescents with ME/CFS compared with healthy controls, nor an increase in depression over time. However, our findings do support two recent paediatric ME/CFS follow-up studies showing stable depression levels over time [67,68]. Although Loades et al [68] observed consistently higher levels of depression in the paediatric ME/CFS group than healthy controls, baseline ME/CFS depression was found to explain most of the variance in follow-up ME/CFS depression, which appears to suggest stable depression levels across time in paediatric ME/CFS.…”

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

“…This is illustrated by Helen and to some extent David, who continued to be dependent on their parents, who were their carers into adulthood. This combination can further impact managing this complex illness [15]. Another critical factor is if the illness occurs during a transition, e.g., from professional to working mother, when tiredness is expected.…”

“…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.…”

Fear avoidance in CFS/ME: invalid results

“…Dear Editor, I would like to point out an error in the abstract by Ali et al (2019). Contrary to what the abstract claims, fear avoidance was not related to fatigue at follow-up (T2).…”