“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!
Current research opportunities
Emerge Australia receives requests from research groups across Australia for assistance in promoting their research and aiding in recruitment. Whilst our Medical and Scientific Advisory Committee evaluates the merit of these studies, it does recognise that not all research studies are suitable for all of those living with ME/CFS. It is important that you have an in-depth discussion with your health provider (i.e. GP or specialist) as well as the medical researchers undertaking the trial, regarding the benefits and risks. There are some possible risks for consumers participating in research studies and it is very important that you seek advice and guidance to ensure that you understand these – please consider both immediate and long-term side effects. 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 contact us here .
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
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
Healthy Adolescents: We need you!
Researchers at Murdoch Children’s Research Institute request your contribution to research that hopes to improve the lives of adolescents with Chronic Fatigue Syndrome.
You or someone you know might be suitable if you/they are:
- Aged between 12 and 19 years
- Healthy
- Interested in brain function, thinking, and fatigue
- Able to attend the Royal Children’s Hospital for one morning
(parking reimbursed)
The study involves completing some problem-solving puzzles and questionnaires, an optional MRI and blood and urine collection.
For more information scan the QR code or to register your interest, please feel free to contact the researchers from the Chronic fatigue Research Team:
Email: Darcy Tatanis at [email protected]
Ph: 0447 902 442
PARsing PEM: does post-exertional autonomic recovery (PAR) impact post-exertional malaise?
Researchers at the Baker Heart and Diabetes Institute request your contribution to research that hopes to understand why post-exertional malaise happens and how to prevent/ treat it.
Are you or someone you know:
- Aged 18-70 years
- Live with ME/CFS or are relatively healthy
- Attend a one-time visit and can travel to the Baker Heart Institute in Melbourne
- Have access to the internet/laptop or desktop computer and have the ability to use them
- Fluent in English
- Have the ability to exercise on an upright stationary bike
For further information visit the Baker Institute at baker.edu.au/parsing-pem or contact the study team at [email protected] or (03) 8532 1817
Investigation of motoneurone firing behaviour and associations with symptom severity in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Researchers at Edith Cowan University request your contribution to research that hopes to discern whether there are differences in the behaviour of nerves that control muscles in people with and without ME/CFS.
Are you or someone you know:
-
- Aged 18-60 years
- Live with ME/CFS or are relatively healthy
- Are able to perform basic exercise tasks
For further information please contact a member of the Research team:
- Dr Christopher Latella at [email protected] or on (08) 6304 3637
- Prof. Janet Taylor at [email protected] or on (08) 6304 3603
