ME/CFS to be included in Australia’s 2026 burden of disease study

ME/CFS will return as a separate condition in Australia’s Burden of Disease Study, due out in December 2026, for the first time since 2003. Supporters say the move could help drive policy, funding and recognition for more than 250,000 Australians living with the condition.

Why it matters: - ME/CFS will be counted separately in Australia’s next Burden of Disease Study, restoring national recognition of the condition after more than a decade out of the framework. - The inclusion could strengthen the case for policy action, service planning and resource allocation for an estimated 250,000-plus Australians living with ME/CFS. - The change also places ME/CFS alongside major health conditions in the country’s core public-health measurement system.

What happened: - ME/CFS will be included in the upcoming Australian Burden of Disease Study, which the Australian Institute of Health and Welfare is set to release in December 2026. - The decision marks the first time since 2003 that ME/CFS has been recognized as a separate condition in the national health framework. - Emerge Australia framed the development as a breakthrough for the ME/CFS community and launched its Count ME campaign around the update.

The details: - The Australian Burden of Disease Study is the country’s main tool for measuring the impact of diseases and health conditions on the population. - The study uses Disability-Adjusted Life Years, or DALYs, to compare health loss across conditions. - ME/CFS was removed from the study in 2011 because of outdated data. - The National Health & Medical Research Council’s ME/CFS Advisory Committee recommended re-inclusion in 2019. - Emerge Australia says it has since pushed for ME/CFS to return to the study by presenting evidence on prevalence and socio-economic burden. - Anne Wilson, chief executive of Emerge Australia, said the inclusion signifies official recognition of the substantial public health burden imposed by ME/CFS. - Wilson said the move places ME/CFS alongside cancer, cardiovascular disease and mental health disorders in a framework that can shape policy development and funding decisions. - Wilson also thanked the Australian Institute of Health and Welfare for working collaboratively on the process.

Between the lines: - The reclassification is about more than statistics; it gives ME/CFS a stronger footing in Australia’s health system after years of being undercounted. - The inclusion may improve visibility for a condition that supporters describe as misunderstood and stigmatized. - Emerge Australia is using the moment to build broader attention around ME/CFS and related issues affecting the community.

What's next: - Emerge Australia says the Count ME campaign will keep focus on AIHW and ABDS updates in the months ahead. - The campaign will also highlight findings from Emerge Australia’s National Burden of Disease Survey on living with ME/CFS and long COVID in Australia. - Other priorities include World Severe ME Day and the effects of NDIS reforms on the ME/CFS community. - The organization says the goal is to secure more attention and resources for people affected by ME/CFS. - More information