A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis

Abstract

Background:An estimated 10% of children and adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience eating difficulties; however, little is known about why these difficulties develop, what the impact is or how to manage them.Methods:Semi-structured interviews were conducted with adolescents (aged 12–17 years) attending a specialist service who have a primary diagnosis of CFS/ME and experience nausea, abdominal pain and/or eating difficulties. A total of 11 adolescents were interviewed (eight female, mean age: 15 years). Transcripts were analysed thematically using techniques of constant comparison which commenced soon after data collection and informed further interview protocols.Results:Adolescents perceived their eating difficulties were caused by abdominal symptoms, being too fatigued to eat and changes to their senses of taste and smell. Some of the adolescents recognised how their eating difficulties were exacerbated and maintained by psychological factors of low mood and anxiety. The adolescents eating difficulties had a negative impact on their weight, fatigue, socialising and family life. They perceived helpful interventions to include modifying their diets, families adjusting and also medical interventions (e.g. medication). Adolescents identified that early education and support about diet and eating habits would have been helpful.Conclusions:If adolescents diagnosed with CFS/ME develop eating difficulties, this has a significant impact on their quality of life, illness and on their families. Not eating increases fatigue, low mood and anxiety which further exacerbates the eating difficulties. Clinicians should screen for eating difficulties in those with symptoms of nausea and abdominal pain, warn adolescents and their families of the risk of developing eating difficulties and provide interventions and support as early as possible.

Pediatric chronic fatigue syndrome: current perspectives

“…CFS and eating difficulties can develop into a vicious cycle where not eating makes the fatigue worse and the fatigue and nausea make eating difficult. 67 Adolescents say that their eating difficulties are caused by abdominal pain, being tired, and changes in their sense of taste and smell. 67 There are no trials for investigating what treatments are effective, but current guidance 56 suggests that eating little and often can be helpful.…”

Health-related quality of life in Norwegian adolescents living with chronic fatigue syndrome

“…Our findings suggest engagement also in diagnostic evaluation. Engagement from nutritionists could potentially be important since approximately 10% of adolescents with CFS/ME suffer from eating-difficulties [13].…”

“…The CFS/ ME disease course is often measured in years, and it is common to experience recurring improvement and relapses [1]. Among adolescents, CFS/ME is the most common cause of long-term absence from school [4,[10][11][12][13].…”

Health-related quality of life in adolescents with CFS/ME, a cross-sectional population based Norwegian study.

“…Adolescents diagnosed with CFS/ME at St. Olavs or Oslo University Hospitals in Norway with age [12][13][14][15][16][17][18] at the time of diagnosis were invited by mail to participate. Participants were asked to fill out a questionnaire and to attend an interview.…”