Quality of Life of Children with ME/CFS

Purpose: This report by ME Research UK highlights findings from one of the first biomedical research projects investigating the quality of life of children with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Conducted by Dr. Gwen Kennedy’s team at the University of Dundee, the study aimed to objectively compare the health and social outcomes of children with ME/CFS to their healthy counterparts.

Key Points:

1. Study Design and Participants
   • Researchers examined 25 children with ME/CFS and 23 healthy children, aged 10–18, matched for age, gender, and puberty stage.
   • Diagnosis of ME/CFS was confirmed using a revised CDC-1994 case definition and clinical examination.
   • Both children and parents completed comprehensive health questionnaires to provide data on physical, social, emotional, and mental health impacts.
2. Quality of Life Findings
   • Children with ME/CFS scored significantly lower in 10 out of 14 areas measured, with particularly low scores in global health (21.4 vs. 84.1 in healthy children) and social limitations due to physical health (24.9 vs. 100).
   • Self-esteem, mental health, body pain, discomfort, and effects on family activities were also notably worse in ME/CFS patients.
   • However, family cohesion and children’s perception of their behavior were similar between the two groups.
3. Comparison to Other Chronic Conditions
   • The quality of life for children with ME/CFS was worse than that of children with type 1 diabetes or asthma as documented in previous research.
   • Physical symptoms of ME/CFS were found to be as disabling as those experienced by individuals with multiple sclerosis and other chronic illnesses.
4. Impact on Daily Life and Education
   • Infections were identified as the trigger for ME/CFS in 88% of cases.
   • Only one child out of 25 was attending school full-time, demonstrating the severe disruption caused by the condition.
5. Prognosis and Recommendations
   • Despite severe impacts on daily life, over half of the children reported improvements in their symptoms, suggesting a better prognosis for children than adults.
   • Dr. Kennedy emphasizes the need for early recognition and diagnosis to minimize the consequences of ME/CFS on children’s education, family dynamics, and overall quality of life.

Target Audience:

• Healthcare Professionals and Researchers: Clinicians seeking insights into pediatric ME/CFS and its long-term implications.
• Advocacy Groups and Parents: Stakeholders advocating for improved care and support for children with ME/CFS.
• Policymakers and Educators: Decision-makers invested in strategies to accommodate the unique challenges faced by children with ME/CFS.

Overall Outcome: Dr. Kennedy’s research confirms the profound impact of ME/CFS on children’s quality of life, underscoring the urgent need for early diagnosis, comprehensive care, and tailored interventions to support young patients and their families.