For such a devastating illness, there is surprisingly little information in the scientific literature about patients’ experiences of living with ME/CFS day-to-day. The few investigations that have been conducted have concentrated on adults, and they show that both physical and mental activity can be severely affected. But what about young people? There have been few formal studies on them to date, even though a report to the Chief Medical Officer in 2002 (read more) stated that ME/CFS “potentially threatens physical, emotional, and intellectual development of children and young people, and can disrupt education and social and family life, at a particularly vulnerable time of life”.
In Norway, the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial) ran for some years (see project details) with the main aim of exploring the underlying causes of ME/CFS in adolescents. The study participants were obtained from all 20 paediatric departments in Norwegian hospitals, as well as from primary care paediatricians and general practitioners who had been invited to refer their patients (aged 12–18 years) to a central Norwegian department of paediatrics. Several scientific reports have already been published from the project data, and the latest, from the Institute of Nursing in Oslo, describes health-related quality of life in 120 adolescents with ME/CFS (72% girls) and 39 healthy controls (read the scientific report). It found that the average length of illness was 21.4 months (only two young people had been ill for less than 6 months), and that the young patients had missed school 65% of the time in the previous month (compared with 2.1% of the time in healthy children). Health-related quality of life was dramatically worse in youngsters with ME/CFS compared with healthy children: on a scale 0–100, they scored a full 44 points lower overall. As regards the specific elements making up quality of life, the ME/CFS patients scored 60 points lower for physical functioning, 52 points lower for school functioning, 28 points lower for emotional functioning, and 27 points lower for social functioning.
Given their chronic illness, it was not surprising that the young ME/CFS patients had a much higher risk of depression-associated symptoms than their healthy peers. However, statistical modelling of the data revealed that the lower quality of life was associated with having ME/CFS rather than with being depressed per se. As the authors say, “Experiencing difficult thoughts and sad feelings (depressive symptoms) might not be surprising, considering the consequences of the disease, such as reduced school attendance and time with peers.”
These Norwegian researchers had previously investigated health-related quality of life in Norwegian children and adolescents who were in remission after acute lymphoblastic leukemia, or who had undergone renal transplantation. They point out that quality of life was more impaired in adolescents with ME/CFS than in the patients with these two other conditions, and they refer to an ME Research UK-funded study from the University of Dundee (read more) which found quality of life in youngsters with ME/CFS to be lower than in equivalent groups with diabetes and asthma (see chart below). The Dundee researchers had also found biomedical anomalies in children – increased oxidative stress and increased white blood cell apoptosis – similar to those seen in adults with ME/CFS (read more).
An important aspect of a dramatically reduced quality of life is the social isolation it brings, as the NorCAPITAL researchers found when they explored adolescents’ own experiences of living with ME/CFS. The lack of participation at school and social gatherings with other teenagers made them feel like outsiders; as the researchers say, the young people “experienced loss of a normal life and the changes in friendships difficult, leading to loneliness and isolation.”
This report is an important contribution to the literature, highlighting the severe impairment that ME/CFS causes to the physical, emotional and social quality of life of young people. This impairment can even be greater that in other chronic diseases, such as acute lymphoblastic leukemia, type 1 diabetes and asthma. And cruelly, it happens at a particularly vulnerable time of life when disruption to education and family has the severest consequences, and when social interaction with peers is most important.
Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study. Winger A, et al. Health Qual Life Outcomes, 2015 Jul 3; 13: 96 (read more).
Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood. Kennedy G, et al. Pediatrics, 2010; 125(6). An ME Research UK-funded study (read more).