Disability Royal Commission Guide for People with ME/CFS

A guide to the ‘Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability’ for people with ME/CFS and their supporters

The Royal Commission presents a unique opportunity for the ME/CFS community in Australia to tell the federal government about significant issues that impact on us.  This is a way for you to contribute to bringing about change so that people with disabilities are better supported to live a safe and independent life. 

This is a unique opportunity for you, alongside others in our ME/CFS community, to use our many voices to bring about change. This can help to ensure people with disabilities are better supported to live a safe and independent life. 

Every voice matters. The greater the number of submissions, the louder our voice.

If an experience has felt harmful or discriminatory to you, then it will be relevant to this Royal Commission.


Purpose of this information

This guide provides people with Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) or ME/CFS (referred to collectively as ME/CFS), their carers and their families, with an outline of the Royal Commission and its process so that you understand:

  • why you should participate
  • what issues you can raise
  • how can you participate
  • who can help you participate


Contents of this guide

Within this guide to making a submission you will find the following topics:

  • About the Royal Commission
  • Is ME/CFS a disability?
  • Participating in the Royal Commission
  • Who Can Help You Participate?
  • How Can You Participate?
  • Issues to Talk About
  • How to Approach Your Submission
  • Royal Commission Key Questions
  • Sample Submission: Person with ME/CFS
  • External Resources

At the bottom of each web page is a button to take you to the next page, or back to the previous page. Below that there are also links to the other pages in this guide so that you can click through to the page of your choice.


Keep a copy of your submission

Please keep a copy of your submission. 

Some reasons why you should keep a copy include:

  • Transmission errors and any potential need to resubmit.
  • Remembering what you wrote and submitted.
  • To refer back to in case you wish to submit additional information at a later date.

You are welcome to email a copy of your submission to our organisation, ME/CFS Australia, to assist us in our advocacy and our own involvement in the Disability Royal Commission. Our organisation will not share or publish your submission without first obtaining your written permission.


The information in this guide is not a substitute for legal advice. The information contained herein is an opinion, written by volunteers of ME/CFS Australia, and therefore does not constitute advice. The opinions or views in this document may not necessarily be the opinions or views of the board, or of our member organisations. Before acting on any information or putting in a submission to the Royal Commission, ME/CFS Australia recommends that you discuss your specific circumstances and requirements with the Royal Commission, your solicitor, or an advocate.

ME/CFS Australia will not be responsible for any errors or omissions in this document, nor the success or failure of any submission that you might make.

You are therefore obliged and should make your own enquiries to ensure that you get the best advice suited to your specific needs and circumstances.

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About the Royal Commission

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