What is the ANCHOR project about?

The ANCHOR project aims to estimate the number of people in Australia living with ME/CFS, and the social and economic burden of ME/CFS for individuals, their families and carers (both formal and informal), and Australian society more generally.

Your participation will help us advance our knowledge of the social, quality of life and health economic impacts of ME/CFS in Australia. While there will not be any direct benefits to individuals who participate, we hope that the information you share with us will help to shape the advocacy and resourcing decisions for people with ME/CFS and their carers in future years beyond the duration of the study.

Overall, the purpose of this study is to better understand the social, financial and quality of life impacts for people with ME/CFS in Australia.

How can I be involved or find out more?

We invite people with ME/CFS and carers of people with ME/CFS to participate in online focus groups and/or interviews where we will ask questions and listen to people with ME/CFS and their carers about their lived experience of the disease. Participation is voluntary. Your choice to take part or not will not affect the healthcare services that you currently receive or your relationship with Emerge Australia. We expect that a focus group will take no more than 1.5 hours of your time (in total) and you are free to leave at any time.

All discussions that occur during the focus groups are confidential. The focus groups will be audio recorded and will then be transcribed. All identifying information will be removed from the information to ensure confidentiality.

If you are over the age of 18 years, you can agree to be involved and register as a potential participant by contacting Dr Julie Campbell (University of Tasmania) by email at [email protected] Upon contact, we will also provide a detailed information sheet and will require a completed consent form if we formally invite you to participate in the focus groups or interviews.

This study has been approved by the University of Tasmania’s Social Sciences Human Research Ethics (HREC) Committee, and the University of Melbourne’s Ethics Committee. If you have concerns or complaints about the conduct of this study, you can contact the Executive Officer of the University of Tasmania’s HREC (Tasmania) Network on (03) 6226 2975 or email [email protected]. The Executive Officer is the person nominated to receive complaints from research participants. You will need to quote number 18683.

What will happen to the information collected during the research?

Our findings will be discussed and published in academic/research journals and other platforms such as Emerge Australia’s website/newsletter and places like “The Conversation”. It is important to note that all results from this research will be reported in aggregated (grouped together) and/or deidentified ways. This means that future readers of the findings will not know who has shared what information. Nothing that you tell us will be shared as being from you.