Symptoms, function and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome : an Australian based, cross-sectional study

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex condition associated with multiple symptoms, everyday functional impairment and reduced quality of life. However, there is a paucity of published literature on the symptoms associated with everyday functional impairment and quality of life of adults in Australia with ME/CFS. In particular, use of psychometrically tested, disease specific measurement tools is limited. This has implications for understanding the unique symptom presentation of ME/CFS and appropriate clinical management. Aim: To explore the association between symptoms, everyday function and quality of life in a cohort of adult Australians with ME/CFS. Objectives: 1) To describe participants demographic characteristics 2) To explore symptoms (using the ME/CFS specific DePaul Symptom Questionnaire (DSQv1) and their association with everyday function and quality of life (using the generic Medical Outcomes 36-item Short Form Health Survey (SF-36) in adults who meet the Institute of Medicine clinical diagnostic criteria for ME/CFS. Method: A cross-sectional sample was obtained from respondents to advertisements on social media, support organisation websites and newsletters. Descriptive statistics were obtained on demographics, symptom scores and everyday function and quality of life. Symptom domains were created from the DSQv1. Associations between symptom domains, everyday function and quality of life were examined using Spearman's correlations. Results: One hundred and fifty-six respondents met the Institute of Medicines clinical diagnostic criteria. The majority of respondents were female (88.5%) and highly educated. In all, 51 (32.7%) were in paid employment and 105 (67.3%) were not in paid employment. All symptom domains had a significant, negative association with the Physical Component Summary of the SF-36 at the p = 0.01 level. The symptom domains with the strongest negative association were post-exertional malaise (Rs = -.596), fatigue (Rs -.539) and pain (Rs = -.506). Conclusion: This Australian study found that post-exertional malaise, fatigue and pain have a strong negative association with everyday function and quality of life in adults with ME/CFS. These findings support local and international literature on the importance of multisymptomatic management of ME/CFS. It also supports investigating the everyday functional limitations of patients and how they perceive their QoL to develop better measurement tools and instigate appropriate supports. Due to the high levels of unemployment in this study, the health economic implications of ME/CFS are of high priority for further study.