Our Position Statement

Published November 2022  Statement   Emerge Australia uses the name ME/CFS as an umbrella term to encompass the varied diagnoses for which PEM is the core feature. Emerge Australia will continue to use this term until the science has definitively concluded whether the illness is one or more separate conditions, and there is consensus on a

The National Disability Insurance Scheme (NDIS) aims to give people with disabilities (and their carers) choice and control over the services and support they receive but many people living with ME/CFS face significant challenges gaining access to the scheme and receiving adequate funding. Anecdotal evidence suggests many people with ME/CFS are rejected from the NDIS

Emerge Australia strongly advocates for the Federal Department of Health to make post-infection disease Australia’s 10th National Health Priority Area (NHPA). The number of Australians living with post-infection disease is rapidly increasing, predicted to be over half a million by the end of 2022, due to a new cohort of post-infection disease patients: those with long COVID.[1] Such numbers will increase the already significant burden of post-infection disease on our health system, economy and society.  

Pacing and rest are individualised and essential management techniques for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Pacing and rest promote safe levels of activity to manage post-exertional malaise (PEM), the hallmark symptom of ME/CFS.

ME/CFS is a permanent condition for most people. Less than 10% recover to pre-illness functioning and 20% of patients may worsen with time.[1] Despite this, many people with ME/CFS experience significant difficulties accessing the National Disability Insurance Scheme (NDIS).

A national, Optimal Care Referral Pathway (OCRP) will provide all people with ME/CFS consistent care across Australia, using an evidence-based, best practice pathway that empowers patients and clinicians to navigate support of complex, multi-system conditions such as ME/CFS, and other post infection diseases, such as long COVID.

The research literature about recovery from ME/CFS is inconsistent, making firm conclusions about recovery rates difficult. In particular, most studies of recovery don’t include a return to pre-illness function as part of their definition of “recovery” and would be more accurately considered studies on rates of improvement than recovery1.

There are approximately 20 different sets of diagnostic criteria for ME/CFS which have been developed over the history of the disease. This has created inconsistency in research, as different diagnostic criteria result in participant samples which are not easily compared between studies.

Emerge Australia recognises the close links between ME/CFS and long COVID. Scientific studies indicate that the most frequent shared symptoms of people with long COVID and people with ME/CFS are post-exertional malaise (PEM), cognitive difficulties and fatigue.

It is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure that Australian ME/CFS patients have access to the best possible care, based on current understanding of the condition and latest evidence.