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Emotional Wellbeing

Adjusting to living with a chronic illness 

Living with disabling conditions like ME/CFS and long COVID, with energy limitations that restrict what you can do, can be very challenging. There are many losses associated with living with these chronic conditions, as they affect all aspects of your life. From the realisation that your health isn’t improving, to the shock of receiving a

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Position Statement

Pacing and Rest Position Statement

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.

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Health Professionals

Clinical Education Impact 2024

2024 has been a busy year for the Emerge Australia clinical education team. We continue to build our capacity to educate as many Australian Health Practitioners as possible on ME/CFS and long COVID. As an important step, this year saw Emerge Australia becoming an RACGP CPD approved provider and delivering two RACGP CPD approved webinar

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Emotional Wellbeing

Crisis support 

ME/CFS and long COVID are conditions that affect your body’s ability to work properly; they are not psychological conditions. However, it’s common to need support with mental health when living with long-lasting physical symptoms. Professional help can guide you through the challenges these conditions bring, help you adjust to a new way of life, and

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Emotional Wellbeing

Accessing mental health support  

ME/CFS and long COVID are conditions that cause your body to not work properly, they are not psychological conditions. But it is not uncommon to need support with mental health when living with physical symptoms that don’t go away. Professional support can help you learn to cope with the challenges your illness brings, adjust to

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General

Webinar Series

As part of Emerge Australia’s commitment to providing up-to-date and evidence based management techniques we have launched a recurring webinar series. You can find those as well all the recent recordings from previous events below. Living with ME/CFS Q&A with Dr Richard Schloeffel OAM World ME/CFS Symposium 2023 Basics of ME/CFS Q&A with Dr Richard

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Management

Preparing information for your doctor

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.

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MECFS Information

What is ME/CFS?

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.

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A man with mecfs laying in bed with headphones on.
Position Statement

ME/CFS – what’s in a name?

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

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Advocacy

NDIS Petitions 2018 and 2019

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

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A woman with mecfs wearing a headset in front of a computer.
Advocacy

Telehealth Campaign

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

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A group of people holding hands in a circle, united against ME/CFS.
Health Professionals

Management and Support

Although there are no TGA approved treatments for ME/CFS or long COVID, healthcare practitioners can do a lot to support people with these conditions. This includes helping patients with:

Energy management: pacing and rest
Step-wise symptom management
Practical support
In addition to our healthcare practitioner information, the Emerge Australia webpage has a wealth of information practitioners may find helpful to share with their patients.

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Position Statement

Access and equity for the NDIS and the DSP

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

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A graph displays the incorporation of ME/CFS in relation to the corona virus.
Position Statement

Post-Infection disease: Australia’s 10th National Health Priority Area

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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General

Positioner Test

Sorry, we cannot find the page you are looking for Please try using the menus or search tool at the top of the page or any of the handy shortcuts we have in our footer at the bottom of the page.

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What is the NDIS?

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

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Two men with ME/CFS sitting at a table talking to a doctor.
Management

Building your healthcare team

To manage your ME/CFS well, you will need a number of different healthcare professionals to help you deal with your ME/CFS symptoms and any other health conditions you may have. 

Many doctors and other healthcare professionals do not specialise in ME/CFS, but they can play a valuable part in your care and health management.

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A stethoscope on top of a bed used for patients with mecfs.
Management

Preparing information for your doctor

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.

Read More »
A MECFS patient comfortably resting under a blue blanket.
Management

Living with Severe ME/CFS

Anil van der Zee lives with severe ME and has given permission for Emerge Australia to share his lived experience.    Anil van der Zee May 1, 2023   Before this year, I was too ill for approximately five years, which prevented me from even thinking about anything related to dancing. A mixture of it being

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A magnifying glass inspecting a stack of mecfs documents.
Management

Advanced Care Planning with ME/CFS

Advance care planning promotes care that is consistent with a person’s goals, values, beliefs and preferences. It prepares the person and others to plan for future health care, for a time when the person may no longer be able to communicate those decisions themselves. 

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A stethoscope on top of a bed used for patients with mecfs.
Position Statement

Optimal Care Referral Pathway Position Statement

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.

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Two individuals with mecfs holding hands, amidst a blurry backdrop.
Position Statement

National Disability Insurance Scheme Position Statement

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).

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A man with ME/CFS is resting on a couch at night.
MECFS Information

Basics of ME/CFS

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.

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A woman with mecfs laying on a white bed.
For Carers

Caring for people with ME/CFS who are bedbound

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.

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Position Statement

Recovery Position Statement

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.

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A poster raising awareness for MECFS.
Awareness

ME/CFS Research Panel

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,

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