“Your story matters - help shape ME/CFS research and pave the way for a better future for all living with ME/CFS”
The AusME Registry and Biobank
Did you know that signing up and participating in the AusME Registry is the single easiest way to become involved in research!
The AusME 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, AusME Registry participants provide data regarding their diagnosis, symptoms, medications, and lived experience with ME/CFS and/or long COVID. This information is then made available to our Approved researchers in a deidentified format. Carers and supporters of those with ME/CFS and long COVID are also warmly welcomed to contribute to the AusME Registry as healthy volunteers.
As an AusME Registry participant, you will be informed of any research studies that you may be eligible to partake in and/or donate to the AusME Biobank.
Current research opportunities recruiting
Emerge Australia receives requests from research groups across Australia to assist in promoting their research and aiding in recruitment. Although our Medical and Scientific Advisory Committee evaluates the merit of these studies, it acknowledges that not all research studies are appropriate for everyone living with ME/CFS and long COVID. Emerge Australia provides the study information below in good faith, but does not endorse any content, activities, or messaging.
It is essential that you engage in a thorough discussion with your healthcare provider (such as your GP or specialist) and the medical researchers conducting the trial, to evaluate the potential benefits and risks to your health before committing to be a study participant. Participating in research studies carries certain risks for individuals, and it is crucial that you seek advice and guidance to fully comprehend these risks—please consider both immediate and long-term side effects. If you have any questions or inquiries regarding any of the studies listed below, please refer to the study contact details.
If you would like more information regarding clinical trials and informed consent, please view the links below:
AusME Biobank: Recruiting NOW!
The AusME Biobank is actively recruiting ME/CFS, long COVID patients and also healthy volunteers who would be willing to donate a blood sample for research. What we are looking for:
- Currently a registered participant of the AusME registry (click here to join)
- Diagnosed with ME/CFS or long COVID by a physician / not diagnosed with ME/CFS or long COVID for healthy controls
- Ages 12+
- 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.
Improve the Wellbeing of those with long COVID through gut therapy
Emerge Australia and Deakin University’s Food & Mood Centre are proud recipients of the 2023 MRFF PASC grant to research long COVID.
We want to work closely with people most impacted by long COVID to design this project. The research team is looking for feedback from people with firsthand or supportive experience with long COVID—whether you’re a patient, a family member, a friend, or a healthcare provider. If this sounds like you, please complete the short survey below to help us learn the best ways to connect with people affected by long COVID.
To learn more about this study click here and here or complete the survey here to express your interest. Alternatively, contact the Research Co-ordinator: Dr James McLure [email protected]
Help us understand brain function in long COVID
Researchers at Edith Cowan University (Joondalup, Western Australia) want to know whether there is a difference in the behaviour of parts of the brain that control muscles in people with and without long COVID.
Are you or someone you know:
- Aged 18-60 years
- Live with long COVID or are relatively healthy
- Are able to perform basic contractions of your hand muscles
For further information please click here or contact a member of the Research team:
Dr Christopher Latella at [email protected] or on (08) 6304 3637
Prof. Tony Blazevich at [email protected] or on (08) 6304 5472
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 (Joondalup, Western Australia) 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 OR learn more here
Have you been diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or orthostatic intolerance?
Researchers at the Baker Heart and Diabetes Institute (Melbourne, Victoria) request your contribution to research that hopes to understand post-exertional and orthostatic intolerance
Patients interested in participating in this study need to satisfy the below requirements:
- Diagnosed with ME/CFS and/or orthostatic intolerance (Postural Orthostatic Tachycardia Syndrome- POTS, or orthostatic hypotension)
- Healthy controls/volunteers also welcomed to particpate
- Are aged 18 years or older
If chosen for this study, participants will need to attend two clinic visits at the Baker Heart and Diabetes Institute. During these visits, participants will complete a cardiopulmonary exercise test (CPET) and provide a small blood sample before and after the exercise. Each visit will last approximately 2-3 hours (Parking and time spent reimbursed).
Following the clinic visits, participants will be asked to complete online questionnaires and wear a device to monitor blood pressure for 5 days at home. Additionally, there is an optional MRI (brain scan).
For more information or to register your interest, please feel free to contact the researchers at the Baker Institute conducting the study:
Email: [email protected]
Multimodal MRI of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Researchers at USC’s Thompson Institute (Birtinya, 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
Healthy Adolescents: We need you to take part in the SPOT-ME study!
Researchers at Murdoch Children’s Research Institute (Parkville, Victoria) 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 click here to register your interest or please feel free to contact the researchers from the Research Team:
Email: Darcy Tatanis at [email protected]
Ph: 0447 902 442
