Historically, inconclusive findings from ME/CFS research and clinical trials have been attributable to methodological problems, small sample sizes, and selection bias toward those less affected by ME/CFS. With recent evidence suggesting that long COVID overlaps ME/CFS (~50% meeting ME/CFS diagnostic criteria), the risks of long COVID research being plagued by the abovementioned limitations are concerning. An online registry collating big data from the very patients affected by these diseases will transform ME/CFS and long COVID research. The ability to thoroughly characterise a vast dataset comprising a heterogenous study population will facilitate impactful research outcomes, supporting the discovery and validation of much-needed diagnostics and treatments.
Since 2019, Emerge Australia has been the custodian of the Australian ME/CFS and long COVID (AusME) Registry and Biobank. With over 2000 registry participants and 150+ donor biosamples (blood), the AusME now serves as a comprehensive and valuable resource - supporting a wide range of research efforts Australia-wide aimed at advancing the understanding and treatment of ME/CFS and long COVID.
The AusME Registry is open to individuals aged 12+ living with ME/CFS, long COVID, or who are otherwise healthy. Data on each participant’s health, medical history, family history, medical interventions and comorbidities are collected longitudinally through validated questionnaires. Furthermore, a purpose-built ME/CFS diagnostic criteria scoring algorithm evaluates and provides diagnostic classification based on three major diagnostic definitions of ME/CFS, assisting researchers with a robust method for cohort selection. Screening of well-characterised participants in the AusME study is invaluable for the linked AusME Biobank, which includes biosamples (whole blood, serum, plasma, and PBMCs) for approved researchers. Currently, blood collection and processing nodes are operational in Victoria and NSW, with plans for expansion into Queensland and Perth.
Given that ME/CFS and long COVID impact multiple body systems, it is essential to broaden the range of biospecimens in the AusME Biobank to include not only blood, but also other samples like faecal, urine, saliva, muscle, and skin. To accomplish this, we propose the creation of the 'AusME Virtual Biobank,' aiming to establish national connections with research groups that hold or are developing their own ME/CFS and/or long COVID biosample collections (both blood-derived and other types), linking these resources with the AusME Registry and Biobank. Interested parties should contact Emerge Australia's Research Manager, Dr Michelle Tavoletti to learn more.
Together, the AusME Registry and Biobank are essential resources for ME/CFS and long COVID research, providing a critical biorepository and facilitating accelerated clinical trial recruitment. They also serve as a valuable evidence base for understanding disease prevalence. Additionally, the AusME Registry will highlight the challenges and hardships faced by those affected by long COVID and ME/CFS, helping to shape policy development and prepare Australia for a future dealing with post-infection diseases.