ANCHOR Study

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.

Latest

Research Digest 29/05/20

Welcome to the 48th edition of the Research Digest featuring a study that investigates differences in immune gene SNP expression in ME/CFS and a systematic review on neurological impairments as measured by neuroimaging techniques.
Research Digest 15/05/20

Welcome to the 47th edition of the Research Digest. This fortnight's edition digests a whole brain MRS study looking at metabolite abnormalities in the brains of ME/CFS patients and a French study investigating muscle excitability in exercising and resting muscles of patients diagnosed with ME/CFS.
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Coronavirus and ME - Simplified facts

Many people with ME/CFS and other vulnerable communities in Australia are concerned about the impacts of the spreading coronavirus disease COVID-19. This is an easy-read resource with the latest information and advice.
Research Digest 06/03/20

Welcome to the 42nd edition, featuring a study into a potential clinically-suitable diagnostic biomarker for ME/CFS and a study that furthers our knowledge of the mitochondrial dysfunction exhibited by ME/CFS patients.
Accessibility
Research Digest 03/04/20

Welcome to the 44th edition of the Research Digest. This edition features a recently published book that highlights the value of biomedical research in ME/CFS and a systematic review into the effect of treatment interventions on pain scores in paediatric ME/CFS patients.
Research Digest 20/03/20

Welcome to the 43rd edition of the Research Digest. This fortnight's edition features two studies that investigate new approaches to the way ME/CFS can be diagnosed using microRNA analysis and fMRI.
Research Digest 24/01/20

Welcome to the 39th edition, featuring a systematic review of ME/CFS randomized controlled trials and a study into the use of heart rate variability as a non-invasive biomarker for predicting fatigue severity in ME/CFS patients.
Research Digest 15/05/20

Welcome to the 47th edition of the Research Digest. This fortnight's edition digests a whole brain MRS study looking at metabolite abnormalities in the brains of ME/CFS patients and a French study investigating muscle excitability in exercising and resting muscles of patients diagnosed with ME/CFS.
Bunnings Sausage Sizzle Raises Money for Emerge Australia

'We just wanted to do something for our daughter who was diagnosed about five years ago with sudden onset ME/CFS,' Peter and Bronwyn said. '...after considering a few different options for raising money, we thought about a Bunnings BBQ.'
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We know that many people with ME/CFS (as well as those caring for them) are experiencing concern about the spread of, and possibly contracting, coronavirus. We recognise that people with chronic illness have valid reasons for additional caution at this time.
Research Digest 1/05/20

Welcome to the 46th edition of the Research Digest. This fortnight's edition features an Australian study examining qualitative feedback from paediatric ME/CFS patients and a study investigating the correlation between ME/CFS disease severity and cellular bioenergetic function.