Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID are debilitating diseases with no approved treatments. Patients (predominantly women) spend years cycling through trial-and-error care, leading to worsening disability, social isolation, and billions in lost economic participation for Australia.
This three-year program will transform care by tracking real-world treatment effectiveness through integrated biological measurements and lived experience data. A mobile clinical nurse will visit participants in rural and regional communities to collect biological samples, conduct symptom surveys, and monitor wearable-device data before and after GP-prescribed treatments. By identifying biological patterns linked with improvement or deterioration, we will determine which treatments work, for whom, and under what circumstances.
Our approach centres women’s voices and experiences whilst removing the primary barrier to research participation: travel. This integration of laboratory science, clinical decision-making, and patient feedback is rarely attempted in ME/CFS research and has transformative potential.
The program will deliver an AI-based predictive tool enabling GPs to rapidly identify the most promising treatments for individual patients, cutting the time to effective care from years to months. This scalable model creates personalised treatment pathways that restore women’s health, independence, and full participation.
This program will deliver measurable outcomes across immediate, intermediate, and long-term timeframes.
Immediate outcomes include identifying treatment effectiveness relative to symptom clusters, with improvement measured through biological assays and patient-reported data. Research insights will be shared through peer-reviewed publications to advance global disease understanding. An AI-based GP decision tool prototype will be developed, providing the foundation for evidence-based recommendations.
Intermediate outcomes focus on pilot implementation. We will conduct soft launch testing through the RACGP Specific Interests Energy-Limiting and Post-Infection Conditions group, gathering real-world feedback from participating GPs. Clinician education sessions will be delivered to pilot users, with participation informing tool refinement. Implementation lessons will establish the validation framework required for future broader deployment.
Long-term outcomes will transform patient lives and system economics. We aim to increase Quality of Life SF-36 Physical Component Summary scores from 33.7 towards the general population mean of 50.7. The annual cost per patient, currently estimated at $63,400, will be substantially reduced through earlier, more effective interventions. This personalised approach will attract further investment to expand the model.
These outcomes establish evidence-based care that reduces burden, improves lives, and creates a scalable framework for complex chronic diseases.
Open data sharing is a core mandate of all OMF-funded research. We will publish in open-access, peer-reviewed journals and public repositories with privacy protections.
Academic and Clinical Dissemination: Research findings will be shared through international conferences and scientific publications. Once validated, our results will inform medical education programs and clinical care guidelines.
AI Tool Development and Validation: The AI-based GP decision tool will be continuously refined with expanding data. Following best practices for medical research translation, independent validation is required before broad clinical deployment—a separate future project. Initial soft launch through the RACGP specific interest group will enable real-world testing and gather lessons to inform validation studies.
Patient and Community Engagement: Plain language summaries will be disseminated through OMF's global channels. We expect to reach patient organisations worldwide, including Emerge Australia and ME/CFS Australia. A webinar will present findings directly to the community.
This strategy ensures research insights reach researchers, clinicians, policymakers, and patients simultaneously, whilst establishing a rigorous pathway for tool validation and deployment.
Open Medicine Foundation Australia accelerates research into ME/CFS, Long COVID, and other debilitating, complex, multi-system conditions, now estimated to affect 1 in 30 people globally, of which 75% are women. The impact varies widely, from mild cases allowing part-time work to severe illness where patients are confined to darkened rooms.
As part of a unique worldwide network, we unite leading scientists to transform how chronic diseases are studied. By openly sharing data and fostering true global collaboration, we fast-track discovery, illuminate disease mechanisms, and remove barriers that slow progress. Our model of open science accelerates the development of precise diagnostics and effective treatments on the pathway to a cure.
We are building research capacity in Australia and contributing to a global effort that redefines what’s possible in complex disease research. Each breakthrough brings us closer to understanding these conditions and delivering personalised, compassionate care. Above all, we work to ensure that every person affected by ME/CFS, Long COVID, and related conditions has access to answers, effective treatment, and renewed hope for the future.
