Table of Contents
Have a Strategy
ME/CFS Australia recognises that the issues that face people in their day to day lives are exceptionally diverse. We have outlined various specific issues that may resonate with your experience, or prompt you to recall events. What you put in your submission is a deeply personal exercise. It is, however, important to have an approach to how you manage your energy, health and capacity.
- We suggest that you begin with a list of issues so that you have a dot point of the key areas that you want to cover. If we take account of everything we have experienced, we can get lost in the detail.
- Group the dot points into key themes.
- Some people might find it easier to put in multiple submissions, each dealing with a specific theme (or themes), in a bite size approach.
- When you outline an issue it must be listed appropriately under each question to which it relates. You can address one issue at a time across each question. This allows you to manage your energy and focus your attention closely to each issue.
This process may, of course, take you many months.
The Commission has plenty of time remaining for submissions to be completed.
You may even wish to deal with one topic at a time and send a submission to the Commission as you complete each topic submission.
The provision of Advocates by the Department of Social Services is currently a work in progress. The role of Advocates is likely to change over time as the providers realise that there will be a need to attend a significant number of locations in person, and obtain information for submissions via multiple approaches.
There are entities that are still appointing Advocates. It is also likely that there will be more people than there are Advocates, so recruiting assistance will be important. There will never be enough advocates to visit all individuals.
With ME/CFS, the making of a submission will on many occasions be particularly challenging – especially when the seriously ill have limited to no ability to talk, hear, or utilise technology.
It will be important to recruit people to assist in the process and to exercise appropriate self-care. Family, carers, partners – these are the most likely candidates to assist in the process. Aside from capacity, they may well have the greatest insight and ability to reveal the issues facing those who are the most unwell/incapacitated.
Alongside all people living with ME/CFS, the voice of the severe and very severe has been unheard for too long.
One option that might assist people is a voice to text program. For example, some people use the speech to text option (dictate) within Microsoft Word in the ‘Home’ tab on the right hand side.
Alternatively, you can buy Dragon Naturally Speaking online but it will require set up for your voice (see: https://www.nuance.com/en-au/dragon/support/dragon-naturallyspeaking.html).
Most smartphones have an audio recording option that allows you to create and email voice memos.
An option that is available is that of Otter – a free website that allows you to convert up to ten hours of recorded speech per month. This site is available at https://otter.ai/.
You can record your voice on your phone, for example, and upload it for conversion to text.
You can, of course, avail yourself of the video/audio submission option as well.
Do Your Best
ME/CFS Australia reiterates that you can only do your best. It is better to have a small contribution and small submission to the Royal Commission, than it is to spend days on it and having a large “crash”. Be mindful of your capabilities and those of the people assisting you. Engage in self-care. Be realistic.
Go back to:
Issues to Talk About
Royal Commission Key Questions
Other pages in this guide
- Disability Royal Commission Guide for People with ME/CFS
- 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 (you are here)
- Royal Commission Key Questions
- Sample Submission: Person with ME/CFS
- External Resources