Many symptoms of ME/CFS can make communicating difficult. Some people who live with ME/CFS report that at times they struggle to recall information, lose their train of thought easily and find comprehending and processing new information difficult.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others.
In 2018, Emerge Australia launched a paper petition to demand better access to the NDIS for people with ME/CFS. After gathering 1400 signatures, it was tabled in Parliament by Greens MP Adam Bandt on 5 December 2018. We launched the same petition online and over 10,273 people signed. The petition has paved the way for
In March this year, the federal government made a range of telehealth medical services temporarily available through Medicare. After many years of campaigning for telehealth services for people living with ME/CFS and other chronic illnesses, Emerge Australia and the ME/CFS community have warmly welcomed this change. The current arrangements were originally intended to expire in
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.
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The National Disability Insurance Scheme is designed to give people with disabilities the support they need to live independent, ordinary lives. It is not means tested – anyone with any level of income or assets can apply, as long as they meet the criteria of having a significant functional impairment. The insurance-based scheme provides disability-related
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.
Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
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.
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).
Join Emerge Australia’s Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and management techniques such as pacing that you can use to manage life with ME/CFS.
People who are bedbound by ME/CFS live each day with limited energy and require a significant level of care to meet their basic daily needs.
Approximately 25% of people with ME/CFS are so severely impacted that they are housebound or bedbound.
The research literature about recovery from ME/CFS is inconsistent, making firm conclusions about recovery rates difficult. In particular, most studies of recovery dont 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.
Emerge Australia’s Research Manager Michelle Tavoletti was joined by leading Australian researchers, Professor Paul Fisher, Dr Sara Ballouz, Dr Chris Armstrong and Professor Ken Walder to unpack their latest local developments in ME/CFS research, as well as provide an update on the Australia ME/CFS Biobank and Patient Registry. This session was designed for those living with ME/CFS,
Join Emerge Australia’s Manager of Patient Support and Information Services Laura Allen and Nurse Educator Kate Herbert in an interactive session to support you in building your post-exertional malaise (PEM) toolkit! This powerful session pools the collective wisdom of our amazing ME/CFS community to support you to come away with new tools to manage PEM.
Emerge Australia Medical Director Dr Richard Schloeffel OAM joined CEO Anne Wilson to answer all your questions about ME/CFS including ME/CFS symptoms, diagnosis, management, GP education and clinical guidelines. This session was designed for those living with ME/CFS as well as their carers, friends, and family members. Come along to gain a deeper understanding of
Join Emerge Australia’s Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and management techniques such as pacing that you can use to manage life with ME/CFS. This session is designed for those living with ME/CFS who
Emerge Australia, the national patient organisation providing services and evidence-based education about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) today issued an alert on a potential major hit to the Federal Budget and health services facing both major parties.
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.
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.
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 welcomes the Federal Governments announcement that Medicare rebates will be made permanent for online and over-the-phone telehealth services provided by GPs, specialists and allied health practitioners.
Emerge Australia uses ME/CFS as an umbrella term. Research has not confirmed whether the illness is one condition, two conditions (ME and CFS), several different conditions or a condition with several subgroups. ME/CFS includes all diagnoses of myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), and ME/CFS.
ME/CFS is a complex illness and has been misunderstood by doctors and scientists worldwide. As we move forward and learn about ME/CFS there are some important key facts Emerge Australia wants to share.
ME/CFS is a complex and disabling disease that affects many systems of the body. These include, but are not limited to, the brain, muscles, digestive, immune and cardiac systems.
As you continue to learn more about the needs and preferences of your person with ME/CFS, the importance of honouring their autonomy, dignity and independence has most likely become an important consideration for you.
Building a successful caring partnership relies on clear and frequent communication to understand the needs and boundaries of both the person you care for and yourself.
Since becoming a carer of a person living with ME/CFS, you may have made some small or big changes in your life. Self-care is an important part of life but can often be the first thing we stop when life gets busy or priorities change.
As a carer of a person living with ME/CFS there may be times when you are called upon to provide support through advocacy. This could be with healthcare professionals, service providers, workplaces or even within your family or friendship circle.
Giving a voice to the unseen and unheard.
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Donations of $2 or more are tax-deductible.
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Emerge Australia is registered as a charity with the Australian Charities and Not-for-profits Commission (ACNC). We are authorised by the Australian Tax Office as a deductible gift recipient (DGR).
ABN/DGR: 22 385 438 041
Donations of $2 or more are tax-deductible.
Level 7, 276 Flinders Street Melbourne VIC 3000
Emerge Australia acknowledges Aboriginal and Torres Strait Islander people as the Traditional Custodians of the land and pays respect to their Elders past and present.
Emerge Australia Copyright © 2025 All Rights Reserved.
Design by Foundation Nova Diem