“Nobody knows the lived experience of ME/CFS better than those who have it, and research can only go so far without your help.”
The AusMe Registry is Now Live!
The AusME Registry is open to people with ME/CFS or long COVID aged 12 and over.
To see more information and sign up, please visit the official AusME Registry website by clicking the link below
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Background & future of the Registry and Biobank
Established in 2019, Emerge Australia are the Custodians of the Mason Foundation-funded Australian ME/CFS Registry (previously known as the You+ME Registry, Aust.) and Biobank.
Offering a comprehensive dataset of well-characterised participant data and biosamples (blood), the ME/CFS Registry and Biobank provide crucial support to Australian medical researchers and their endeavours, aimed at advancing knowledge and uncovering essential diagnostics and effective treatments, for the very individuals they represent.
Only with granted access by Emerge Australia’s Medical and Scientific Advisory (MSAC) and Biobank Access Committees, can data and materials be accessed. Ethically approved research projects access data/blood samples in a deidentified format (meaning no one sees your personal information).
Since its inception, support from ME/CFS participants, their supporters (the ‘healthy control’ cohort) and the medical research community has been overwhelming. Collectively, their involvement has contributed significant data, as demonstrated in the following infographic.
In October 2023, the ME/CFS Registry (You+ME, Aust.) and Biobank will be expanded and renamed the:
Australian ME/CFS and long COVID (AusME) Registry and Biobank
The newly expanded Registry will accommodate the following cohorts of participants:
- People aged 12+ with ME/CFS (with or without having had a COVID infection)
- People aged 12+ with long COVID
- Healthy volunteers aged 12+ (with or without having had a COVID infection)
Why did the Registry expand?
Recent evidence has shown that approximately 50% of people diagnosed with long COVID will go on to satisfy ME/CFS diagnostic criteria (Kedor, C. et al ; Legler et al). Therefore, the study of long COVID in addition to ME/CFS presents a unique opportunity in which researchers can:
- Study the acute/early stages of ME/CFS progression – which may lead to the discovery of earlier diagnostics and interventions
- Identify factors that might predispose individuals to develop ME/CFS or long COVID, after a viral infection
- Compare the pathophysiological similarities and differences between long COVID and ME/CFS – potentially revealing shared therapeutic targets or pathways.
- Assess the long-term economic and societal impacts of both long COVID and ME/CFS, emphasizing the need for adequate funding and research efforts into these two diseases
Participating in the AusME Registry
Did you know that signing up and participating in the AusME Registry is the single easiest way to become involved in research!
You can sign up to participate in the AusME Registry if you fit into one of these three groups:
- People aged 12+ with ME/CFS (with or without having had a COVID infection)
- People aged 12+ with long COVID
- Healthy volunteers aged 12+ (with or without having had a COVID infection)
To sign up, all you need is an email address!
Once you have registered you will be prompted to complete the “Onboarding” questionnaires. This provides researchers with baseline information about you and your illness and also informs us if you would like to be a blood donor for the AusME Biobank.
Each questionnaire includes an estimated completion time, but the entire onboarding process, on average, takes approximately 45 minutes. This duration may be longer or shorter depending on the severity of your ME/CFS.
All surveys can be saved and done at your own pace, in multiple sittings.
Ongoing participation:
Every 3 months following sign-up, you will receive an email to let you know that you have an open ‘Study Visit’.
The ongoing longitudinal collection of your health information (through these regular Study Visits) allows researchers to track and understand how your health changes over time and illuminate the progression of the disease, the long-term impact of treatments, and factors influencing recovery or deterioration.
Each Study Visit involves the completion of 9-10 individual surveys and takes approximately 45 mins to complete.
The Study Visit surveys are open for 14 days, and similar to onboarding, can be saved and done at your own pace, in multiple sittings. Their completion is voluntary and dependent on your ability to undertake the study, when available.
Participation in Australian medical research projects:
By participating in the AusME Registry, you may be contacted directly via email/phone in relation to ME/CFS and long COVID research studies that you are likely to be eligible for (based on the data you have contributed). These research studies are approved by Emerge Australia’s Medical & Scientific Advisory Committee (MSAC).
Participation in these additional studies is not limited to AusME Registry members, so you have the option to engage even if you’re not a part of the Registry.
If you would like to see more information regarding the currently recruiting research projects in Australia CLICK HERE
Donating a blood sample to the AusME Biobank
All AusME Registry participants can register their interest to contribute their blood samples to research. Being able to match blood samples stored in the AusME Biobank to the data collected via the AusME Registry can provide a comprehensive picture of each individual’s health profile, enabling more precise research and fostering significant strides in understanding and treating conditions like ME/CFS and long COVID. Donating blood is voluntary and is not a requirement for participating in the AusME Registry.
Based on the requirements of the researchers utilising the AusME Biobank samples, we contact AusME participants via email directly, if we believe that they are likely to be a suitable candidate for donation.
Donating a blood sample does require additional time and energy investment. Below is what is involved:
- Reading the Participant Information Statement for the Biobank (10-15mins)
- Signing an e-consent form for the Biobank (5-10mins)
- Completing Biobank screening survey (10-15mins)
- Participate in a follow-up phone consult to confirm your eligibility (10-15mins)
- Attend a blood draw appointment (weekdays only) at one of our specific pathology sites where you will donate up to 100mL of blood (30-45mins)
- Completing a ‘Day of Collection’ survey within a few days of your donation (10-20mins)
*Please note that all times are approximate and may vary depending on the severity of your illness.
We accommodate our donors as best we can. Your health is our priority. Please let us know how we can assist you during the blood collection process.
Blood donation is not compulsory for all/any studies that you are informed about. Please seek medical guidance from a medical practitioner, to discuss your participation, if necessary.
Additionally, choosing to not participate in one study doesn’t mean you won’t be asked again in the future.
FAQ - AusME Registry
Do I have long COVID?
If you’ve experienced the continuation or development of new symptoms 3 months following infection with the SARS-CoV-2/COVID -19 virus, and these symptoms have lasted for at least 2 months with no other explanation, you may be living with long COVID or Postacute sequelae of SARS-CoV-2 (PASC).
What happens if I miss a study visit or am too unwell to contribute?
Don’t worry! The next one will open in three months’ time. Every piece of data you provide is valuable, and a missed study visit here and there does not impact the research stemming from your participation.
What will happen to my data if I have previously been a You+ME Registry participant?
Your data is safe, stored, and will continue to be used for ME/CFS research. If you wish to continue contributing your health information via the AusME Registry we link all of your You+ME data to your AusME profile.
FAQ - AusME Biobank
How can I donate a blood sample for research?
To be considered for donation we require that all patients sign themselves up to the AusME Registry, and, at the very minimum, complete all of the onboarding surveys. Based on the answers provided in these surveys, we determine which patients meet the project requirements of any of the approved ME/CFS researchers using the Biobank. Then we directly contact these participants on the AusME Registry to invite them to provide a blood donation.
Can I just donate a blood sample and not actively participate in the AusME Registry?
Yes! When you sign up to the AusME Registry you can ‘opt out’ of participating in the ongoing Study Visits beyond the onboarding survey set. This means that you’ll create a AusME participant profile and provide all of your baseline health and demographic information BUT you will only need to update your health information IF you are invited to donate a blood sample (the researchers will need an up-to-date ‘snapshot’ of your health).
I have a friend or family member who does not have ME/CFS or long COVID. Can they donate a blood at the same time as me?
Yes, as long as they meet all of the criteria for a ‘healthy’ donor. Let one of the friendly Biobank team know during your phone consultation and we will organise a double donation appointment.
I am house or bedbound. Can I still donate a blood sample?
We are always working on ways in which we can collect blood donations from those who are unable to physically attend a donation site. If you are house or bedbound and would like to be considered as a donor please get in touch with the AusME Registry and Biobank manager.
AusME Registry & Biobank Ethical Approval
All research studies involving human data or biosamples require ethical approval from an NHMRC-approved Human Ethics Committee. The AusME Registry and ME/CFS Biobank are currently approved by the La Trobe University Human Research Ethics Committee (HEC20027 and HEC20161).
Get in contact with us
If you have any questions or would like to learn more about the AusME Registry and Biobank please feel free to get in touch with the AusME team here or call Emerge Australia on 1800 865 321 and press 3 when prompted
