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Join Emerge Australia’s Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and management techniques such as pacing that you can use to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.
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.
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.
Emerge Australia have compiled a summary of findings from our 2019 survey to support medical practitioners who wish to increase their knowledge of the lived experience of people with ME/CFS.
Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with ME/CFS 2019 paints a detailed picture of the experiences of living with ME/CFS.
The National Disability Insurance Scheme (NDIS) is designed to help support people with disability. Click here to access resources developed to assist people with ME/CFS to understand the NDIS and what is required to apply.
How a diagnosis of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) is made, the severity scale of ME/CFS, and the importance of early and accurate diagnosis
Emerge Australia conducted the first national health and wellbeing survey of people living with ME/CFS in 2015.
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