“Your story matters - help shape ME/CFS research and pave the way for a better future for all living with ME/CFS”

The ME/CFS Biobank and Registry

Did you know that signing up and participating in the You+ME Registry is the single easiest way to become involved in research!  

The Registry is a patient-driven project, created by and for the people who use it, that aims to collect detailed demographic and health information from individuals living in Australia. Using a secure web-based portal, Registry participants provide data regarding their diagnosis, symptoms, medications, and lived experience with ME/CFS. This information is then made available to our Approved researchers in a deidentified format. Carers and supporters of those with ME/CFS are also warmly welcomed to contribute to the You+ME Registry as healthy volunteers.

As a Registry participant, you will be informed of any research studies that you may be eligible to partake in and/or donate to the ME/CFS Biobank.

Click here to learn more or join the registry!

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Current research opportunities

Emerge Australia receives requests from research groups across Australia for assistance in promoting their research and aiding in recruitment. If you have any questions or enquiries relating to any of the studies listed below, please refer to the study contact details.

ME/CFS Biobank: Recruiting NOW!

The ME/CFS Biobank is actively recruiting ME/CFS patients and healthy volunteers who would be willing to donate a blood sample for research. What we are looking for:

• Currently a registered participant of the You+ME registry (click here to join)
• Diagnosed with ME/CFS by a physician / not diagnosed with ME/CFS for healthy controls
• Ages 18+
• Not pregnant, breastfeeding or both
• Located in or around (or are willing to travel to!) one of the following suburbs:

VICTORIA	NEW SOUTH WALES
Clayton	Moss Vale
Mulgrave	Campbelltown
Berwick	Liverpool
Croydon	Bondi Junction
Box Hill	Maroubra Junction
Clifton Hill	Blacktown
Narre Warren	Penrith
Mount Waverley	Castle Hill
	Mona Vale
	Gosford
	Asquith
	Northbridge
	Kogarah

 For more information on how you can get involved in the Biobank please email us at: [email protected]

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Can dietary supplementation with krill-oil improve ME/CFS symptoms?

Researchers from Deakin University (VIC) are recruiting for their study that aims to address the efficiency of krill oil supplementation in treating ME/CFS and understand the mechanism of ME/CFS.

Patients interested in participating in this study need to satisfy the below requirements:

• Have been clinically diagnosed with ME/CFS
• Are aged 18 years or older
• Not currently pregnant or breastfeeding
• Not allergic to shellfish

Study involves 12 week supplementation, donating blood samples, grip strength and non-invasive body composition testing. Patients will need to be located in or around the Greater Melbourne and Geelong regions.

For more information or to register your interest, please feel free to contact the researchers at Deakin University conducting the study:

Email: [email protected]

Ph: (03) 9244 5207

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Multimodal MRI of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Researchers at USC’s Thompson Institute (QLD) are recruiting for a project that aims to further understanding of the underlying illness process of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and to develop imaging criteria that will aid the diagnosis of ME/CFS.

Patients interested in participating in this study need to satisfy the below requirements:

• Are healthy (with a sedentary lifestyle)
• Are aged 18-65 years

OR

• Have ME/CFS, Fibromyalgia, fatigue conditions without known explanations, or Long COVID.
• Are aged 18-65 years

Study involves questionnaires, vital sign measurement and a joint hypermobility task, wearing an activity monitor of 14 days, and at least ONE magnetic resonance imaging (MRI) scan (60 minutes scanning time plus preparation).

Patients will need to be able to travel to the Thompson Institute on the Sunshine Coast (QLD). Each participant will receive $50 for travel reimbursement.

For more information or to register your interest, please feel free to contact the researchers in the Chronic Fatigue Syndrome Research Team:

Email: [email protected]

Ph: (07) 5456 5445

Website: www.usc.edu.au/thompson-institute/cfs-study