Australian registry reports poor health and wellbeing in people living with ME/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition hallmarked by post-exertional malaise accompanied by an array of multisystemic symptoms. Consequently, people living with ME/CFS experience significant health impacts and report poor health-related quality of life (HRQoL). Living with a condition of an area of unmet need, there is a call for a greater understanding of the health impacts of ME/CFS in Australia. Despite growing recognition and awareness, large-scale national comparative investigations using ME/CFS cohorts have not been reported.

The National Centre for Neuroimmunology and Emerging Diseases houses a significant Australian registry of people with ME/CFS. Self-reported questionnaire data collected from people with ME/CFS and non-fatigued controls (NFC) between 2014 and February 2026 was exported from applications including Research Electronic Data Capture (REDCap) and LimeSurvey. Data was collected pertaining to the sociodemographic background, medical history, symptom presentation (for people with ME/CFS), and validated patient reported outcome measures to assess HRQoL. The questionnaire covered medical history, routine medications, symptom presentation, and HRQoL, using validated tools including the 36-item short form health survey (SF-36). Data was analysed using independent student's t and chi-square tests, linear regression analysis, principal component analysis (PCA), and k-means clustering. Data was presented as mean and standard deviation or percentages. Statistical analysis was completed using SPSS and RStudio with a significance set at p < 0.05.

Responses were analysed from n = 797 NFC (41.72 ± 13.86 years, 62.6% female) and n = 2,873 people with ME/CFS (44.85 ± 13.77 years, 75.2% female). Participants with ME/CFS fulfilled Fukuda (39.0%), CCC (30.4%) and ICC (30.6%) case definitions. Analysis of symptom presentation differed in both severity and frequency according to the most stringent case definition met; however, this did not predict poor HRQoL outcomes. HRQoL was significantly impaired compared with NFC, and people fulfilling ICC were more likely to report poorer outcomes. Regression analysis revealed the impact of multisystemic symptoms on both physical and mental functioning. K means clustering returned four clusters which differed according to stringent case criteria met, severity and frequency of symptoms.

This large-scale national investigation highlights the significant symptom burden and reduced HRQoL in people with ME/CFS. These findings emphasise the need for tailored clinical approaches and further research into symptom clustering for the purpose of identifying clinical subtypes.