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Abstract Background ME/CFS is a disorder characterized by recurrent fatigue and intolerance to exertion which manifests as profound post-exertional malaise. Prevalence studies internationally have reported highly variable results due to the 20 + diagnostic criteria. For Australia, the prevalence of ME/CFS based on current case definitions is unknown. Objectives To report prevalence of ME/CFS in patients aged ≥ 13 years attending Australian primary care settings for years 2015–2019, and provide context for patterns of primary care attendance by people living with ME/CFS. Methodology Conducted in partnership with the Patient Advisory Group, this study adopted a mixed methods approach. De-identified primary care data from the national MedicineInsight program were analyzed. The cohort were regularly attending patients, i.e. 3 visits in the preceding 2 years. Crude prevalence rates were calculated for years 2015–2019, by sex, 10-year age groups, remoteness and socioeconomic status. Rates are presented per 100,000population (95% confidence intervals (CI)). Qualitative data was collected through focus groups and in-depth 1:1 interview. Results Qualitative evidence identified barriers to reaching diagnosis, and limited interactions with primary care due to a lack of available treatments/interventions, stigma and disbelief in ME/CFS as a condition. In each year of interest, crude prevalence in the primary care setting ranged between 94.9/100,000 (95% CI: 91.5–98.5) and 103.9/100,000 population (95%CI: 100.3–107.7), equating to between 20,140 and 22,050 people living with ME/CFS in Australia in 2020. Higher rates were observed for age groups 50-59 years and 40-49 years. Rates were substantially higher in females (130.0–141.4/100,000) compared to males (50.9–57.5/100,000). In the context of the qualitative evidence, our prevalence rates likely represent an underestimate of the true prevalence of ME/CFS in the Australian primary care setting. Conclusion ME/CFS affects a substantial number of Australians. Whilst this study provides prevalence estimates for the Australian primary care setting, the qualitative evidence highlights the limitations of these. Future research should focus on using robust case ascertainment criteria in a community setting. Quantification of the burden of disease can be used to inform health policy and planning, for this understudied condition.

Abstract Background Concerns have grown that post-acute sequelae of COVID-19 may affect significant numbers of survivors. However, the analyses used to guide policy-making for Australia’s national and state re-opening plans have not incorporated non-acute illness in their modelling. We, therefore, develop a model by which to estimate the potential acute and post-acute COVID-19 burden using disability-adjusted life years (DALYs) associated with the re-opening of Australian borders and the easing of other public health measures, with particular attention to longer-term, post-acute consequences and the potential impact of permanent functional impairment following COVID-19. Methods A model was developed based on the European Burden of Disease Network protocol guideline and consensus model to estimate the burden of COVID-19 using DALYs. Data inputs were based on publicly available sources. COVID-19 infection and different scenarios were drawn from the Doherty Institute’s modelling report to estimate the likely DALY losses under the Australian national re-opening plan. Long COVID prevalence, post-intensive care syndrome (PICS) and potential permanent functional impairment incidences were drawn from the literature. DALYs were calculated for the following health states: the symptomatic phase, Long COVID, PICS and potential permanent functional impairment (e.g., diabetes, Parkinson’s disease, dementia, anxiety disorders, ischemic stroke). Uncertainty and sensitivity analysis were performed to examine the robustness of the results. Results Mortality was responsible for 72-74% of the total base case COVID-19 burden. Long COVID and post-intensive care syndrome accounted for at least 19 and 3% of the total base case DALYs respectively. When included in the analysis, potential permanent impairment could contribute to 51-55% of total DALYs lost. Conclusions The impact of Long COVID and potential long-term post-COVID disabilities could contribute substantially to the COVID-19 burden in Australia’s post-vaccination setting. As vaccination coverage increases, the share of COVID-19 burden driven by longer-term morbidity rises relative to mortality. As Australia re-opens, better estimates of the COVID-19 burden can assist with decision-making on pandemic control measures and planning for the healthcare needs of COVID-19 survivors. Our estimates highlight the importance of valuing the morbidity of post-COVID-19 sequelae, above and beyond simple mortality and case statistics.