Our Nova Diem

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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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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A doctor is providing support to an elderly woman with mecfs.
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 man with mecfs lying in bed with his hand on his face.

Stop. Rest. Pace.

People with ME/CFS and Long COVID are not able to do all of the activities they used to be able to do. We experience an increase in symptoms after simple activities that would not have been a problem before ME/CFS or Long COVID came into our lives.

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

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.

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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A MECFS patient comfortably resting under a blue blanket.

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.

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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