Adult & peer ‘disbelief’ in ME/CFS adds significantly to burden for teen patients

Why do young people with CFS/ME feel anxious? A qualitative study
– Source: Clinical Child Psychology and Psychiatry, Oct 23, 2012

[Note: This small study may help healthcare professionals recognize how, in addition to bearing the heavy burdens common to all kids with chronic illnesses, teens with ME/CFS endure adults’ and peers’ belief that theirs is illegitimate.]

By Hanne Fisher, Esther Crawley

Young people with chronic fatigue syndrome or myalgic encephalopathy (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 analyzed 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.

Source: Clinical Child Psychology and Psychiatry, Oct 23, 2012. PMID: 23093520, Fisher H, Crawley E. Paediatric CFS/ME Service, Royal national Hospital for Rheumatic Diseases; University of Bristol, Centre for Child and Adolescent Health, UK. [Email:]

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