Why do young people with CFS/ME feel anxious? A qualitative study

Abstract

Young people with chronic fatigue syndrome or myalagic encephalopathy (CFS/ME) (CFS/ME) experience higher levels of psychological distress than healthy controls and young people with other chronic illnesses, and it was recently demonstrated that 38% of this population scored above the clinical cut-off on the Spence Child Anxiety Scale. Subscales of social and separation anxiety were consistently high across gender and age groups. In this study, we used qualitative methods to help us understand more about these two types of anxiety in young people with CFS/ME. Eleven young people (age 12-18) were interviewed. Interviews were self-directed by the participants and were wide ranging. The transcripts were analysed using interpretative phenomenological analysis. Five superordinate themes were identified: social loss and adjustment; introduction of uncertainty and unpredictability; the vulnerable self; individual differences; and contributions towards recovery. Many themes were identical to those described in young people coping with other chronic illnesses in adolescence. In addition, young people with CFS/ME describe experiences associated with the perceived illegitimacy of this condition, namely: feeling unable to explain their illness; bullying from peers; disbelief; and distrust from adults around them. This becomes an additional challenge for these young people. Clinicians need to be aware of these problems, and offer appropriate support.

Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies

“…One study employed a family interview,46 all others used individual interviews (in-depth and semistructured). Two studies included specific populations: recovered patients47 and those with high anxiety 48…”

“…This is best described by loss, which captures the changes in children's relationships with friends and family due to the isolating effect of CFS/ME 48. Long periods spent unable to get out of bed and out of the house, detaches children from normal social experiences.…”

Social participation in young people with nonepileptic seizures (NES): A qualitative study of managing legitimacy in everyday life

“…Several studies have described how young people with NES and other types of MUS feel that their identity is under threat when their credibility is questioned [4,24]. They describe a lack of trust from the healthcare services, and difficult feelings due to the contentious and uncertain condition [4,[24][25][26][27].…”

The Self beyond Somatic Symptoms: A Narrative Approach to Self-Experience in Adolescent Chronic Fatigue Syndrome

“…Moreover, although major depressive disorder is an exclusionary criterion for CFS, the overlap with many depressive symptoms and feelings (e.g. severe fatigue, sleep problems, hopelessness, sadness) is universally recognized, and similarities on a self-experiential level could thus equally not be ruled out [2,6,9,13,14,29]. Also, while the study sheds light on self-experience in adolescent CFS, it is not clear whether the findings would be the same in similar conditions, like other FSSs and DSM-5 somatic symptom disorder - in which the criterion of symptoms being medically unexplained has been dropped [1,3,31].…”

“…Other studies have focused on the presence of negative emotionality in young patients with CFS [13]. This body of research has clearly demonstrated high levels of affective distress, such as anxiety and depression in patients with CFS [2], although it is not clear whether these states are implicated in the causation of CFS, or whether they are secondary to persistent somatic complaints [14].…”