The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia

ObjectiveThis study aimed to estimate costs of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to patients, government and Australian society.MethodsAustralian ME/CFS patients and their carers were recruited using convenience sampling. Patients completed an online retrospective cost diary, providing ME/CFS-related direct medical, non-medical and indirect costs. Informal care costs were collected directly from carers. Data from the Pharmaceutical Benefits Scheme and Medicare Benefits Schedule were linked to participant survey data. Annual per patient and total societal costs were estimated, broken down by category and presented in 2021 AUD. Factors associated with higher costs were investigated using generalised linear models.ResultsOne hundred and seventy five patients (mean age 49 years s.d. 14, 79.4% female) completed the cost diary. Estimated total annual societal costs of ME/CFS in Australia ranged between $1.38 and $10.09 billion, with average annual total costs of $63 400/patient. Three-quarters of these costs were due to indirect costs ($46 731). Disability severity was the key factor associated with higher costs, particularly for indirect costs (being 2.27-fold higher for severe disability than no/mild disability).ConclusionsME/CFS poses a significant economic burden in Australia, owing mainly to high indirect and informal care costs. What is known about the topic? Whilst evidence internationally suggests ME/CFS has a very high economic burden, very few studies have specifically explored the economic impact of ME/CFS in Australia. What does this paper add? This study reports that ME/CFS costs the Australian society up to A$10 billion per year. Productivity losses and informal carer costs are the main contributors to this. What are the implications for practitioners? It is critically important that practitioners are supported to diagnose and manage ME/CFS. This can be achieved through the development of Australian clinical guidelines and prioritisation of research funding to develop diagnostic approaches and therapeutic interventions to manage ME/CFS.