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Bringing ME/CFS and Long COVID sectors together around Recommendation 8 

Media Release: 27 March 2024

Sick and Tired: Casting a long shadow Long COVID Inquiry 2023  

Recommendation 8: The Committee recommends funding be made available for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research and patient support and that this funding should be allocated in consultation with peak bodies for ME/CFS and with note of the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council. 

Emerge Australia is the national patient organisation supporting people with ME/CFS and Long COVID through patient support and information, clinical education, advocacy and biomedical research. People affected by ME/CFS and Long COVID can lead better lives being understood and supported by the latest clinical practice and scientific evidence.  

We offer support to an estimated 250,000 Australians with ME/CFS and around 400,000 with Long COVID. For those living with ME/CFS 75% are women and 25% are house or bed-bound. The estimated annual cost of ME/CFS to the Australian economy is $10-14.5 billion. 

Clinical Guidelines 

In 2019, former CEO of the NHMRC Prof Anne Kelso supported the recommendation to update the 2002 clinical guidelines for ME/CFS: 

I have decided that NHMRC should develop clinical guidance on ME/CFS. The …. current Australian advice, published by the Royal Australasian College of Physicians in 2002, needs to be updated and replaced. We also need to identify a funding source to develop the guidance. 

Australia’s now 22-year-old clinical guidelines remain. As captured in the UK guidelines, there have been significant developments in the understanding of ME/CFS and the most appropriate ways to assess, diagnose, treat and manage the condition. 

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

Clinical Education 

Underdiagnosis, misdiagnosis, disbelief and inappropriate management from GPs prevent patients from receiving correct care for their condition. Research estimates 90% of people with ME/CFS have not been diagnosed and only 27% of respondents in Emerge Australia’s 2019 Health and Wellbeing survey considered their GP to be well informed about ME/CFS.  

Now, differentiation between ME/CFS and Long COVID is also critical for accurate diagnosis and patient management. Combined with outdated clinical guidelines, poorly educated GPs are left largely unable to assist these patients.  

Early diagnosis and evidence-based treatment and management of people with ME/CFS and those with Long COVID may lead to reduced illness severity and increased likelihood of recovery. This will reduce the burden of disease on the economy and health system. 

Patient Services 

Emerge Australia is the only national patient organisation delivering telehealth services to people living with ME/CFS.  Whilst our services are available to up to 250,000 people living or impacted by ME/CFS in Australia, similar support is delivered to Long COVID patients increasing the load on already gated services. 

While $220,000 per year over 4 years is welcome, it remains insufficient to fund the full range of services that the ME/CFS and Long COVID communities need.  This includes:  social work, physiotherapy, psychology, occupational therapy. These services can all be delivered via Telehealth.

Expansion of Emerge Australia’s national telehealth program to include allied health professionals services via Telehealth. An expanded services will increase the capacity of Australians with ME/CFS, Long COVID and other post-infection diseases, to build health literacy, and be supported via Optimal Care Pathways to allied health services, access medical care; disability support services, housing, economic and social wellbeing support.  

Research Investment 

After more than a decade of no funding, the federal government has provided $4.7million for ME/CFS research since 2019. The scale of this investment is negligible compared with other, similar, diseases. For example, the Australian government recently pledged $50 million in initial funding for Long COVID research.  

*funding allocated 

Appropriately funded biomedical research, with patient codesign, will improve health and wellbeing outcomes for people living with ME/CFS. Greater investment can position Australia as a leader in ME/CFS research.  


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