Participating in the Royal Commission

Unique opportunity

This is a unique opportunity for you, alongside others in our ME/CFS community, to use our many voices to bring about change. 

Our community has been substantially invisible to those who create policy.  This has denied many of us access to the safety nets we require; the respect, credibility, compassion and support accorded to those who are ill; the treatment we need; and the urgent research funding needed to find diagnostic markers, effective treatments and a cure.

The Royal Commission holds the potential to expose these failings and lead to change.

The ME/CFS experience is poor 

In 2015, former Senator, Scott Ludlam, stated in the Senate that he was “struggling to think of a cohort of people in our community that large for whom there is so little.”  The ME/CFS Advisory Committee’s Report to the NHMRC Chief Executive Officer in April 2019 stated that people with ME/CFS experience “stigma, scepticism, unintended harm, isolation, and a lack of supportive care” because of the lack of understanding of the condition, the poor direction and quality of research, lack of awareness and recognition.   

The Committee reported that patients “described feeling dismissed, negatively stereotyped and stigmatised” by health services and that essential supports, such as the NDIS and Centrelink, were failing to meet the needs of deserving applicants.  

While some of the issues experienced by people with ME/CFS have been recognised, the full range and depth of harmful experiences remain unacknowledged. We know that people with ME/CFS experience a broad range of neglect, abuse and exploitation across a multitude of social and institutional spheres.   It is important to capture these experiences and share them with the Royal Commission if we are going to effect change.

Your story counts

Amongst up to 250,000 people who have ME/CFS and the thousands who care for them, there are many experiences that fall within the terms of reference of the Royal Commission.   Our community knows best what the real experience of ME/CFS is, including the discrimination, neglect, abuse, harms, denial of treatment, attitudes and physical or emotional violence that accompanies the diagnosis. 

By telling multiple stories that cover our shared experiences, we can highlight our major areas of concern to the Royal Commission. 

Only you can tell your story. Your story might also be the experience of many others who do not have the ability to tell their own story.

Carers, family and others

This inquiry will accept submissions from across the broad spectrum of people who are associated with, and care for, people who have ME/CFS. Carers, family members, associates, health practitioners and others can make submissions to the Royal Commission.   

Where the person with ME/CFS is too unwell to make their own personal submission, the voice of someone close to them, is important.

It is equally important for you, as a carer or family member, to share your own experiences and observations, told from your perspective as someone whose life is impacted by ME/CFS.

Strength in numbers

The way the Royal Commission is set up, the voice of each and every person can be heard. No matter how simple or brief your submission, every submission counts. It will be very hard to ignore the voices of tens of thousands of patients and carers telling similar stories of harm, stigma, discrimination, violence, abuse and neglect.   

If the Royal Commission understands that there are common experiences, issues and interactions, then the Commission is more likely to recommend helpful changes.