The process for the development of the first Australian ME/CFS guidelines has begun with the announcement of the National Health and Medical Research Council’s (NHMRC) timeline, committee membership, and project aims.
The NHMRC has never before issued or approved guidelines for ME/CFS and there are no current Australian clinical practice guidelines for the disease, however, in August 2024, the Department of Health and Aged Care allocated AUS$1.1 million to the NHMRC to develop them. The ultimate goal being to improve diagnosis, treatment and care of patients living with ME/CFS in Australia.
The guidelines will be aimed at primary care, with a particular focus on the interactions between patients and GPs and appropriate referral pathways however, the NHRC also recognises that there are other conditions (such as long-COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia) that share common symptoms with ME/CFS, and the guidelines will make reference to these conditions where appropriate.
Committees
NHMRC has established 2 committees to advise on this work:
- a Steering Committee to advise on the initial set up of this project. Emerge Australia’s CEO, Anne Wilson being 1 of the 3 individuals announced.
- a Guideline Development Committee to oversee the guideline development process and draft recommendations. Two of the committee members have links to ME Research UK – Associate Professor Sarah Knight being a former holder of ME Research UK funding and Professor Sonya Marshall-Gradisnik whose team at Professor Sonya Marshall-Gradisnik at the National Centre for Neuroimmunology and Emerging Diseases, Griffith University is presently undertaking ME Research UK-funded research.
Timeline
The NHMRC has laid down the following (non-binding) timeline leading to implementation in March 2028. Evidence mapping activities are currently underway to source high-quality international guidelines (such as the UK’s Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management ) from which to draw recommendations, including models of care and referral pathways.
| Planning and governance | September 2024 to May 2025 | 8 months |
| Scoping and consultation | January to June 2025 | 6 months |
| Evidence review | June 2025 to June 2026 | 12 months |
| Development of recommendations | June 2026 to February-June 2027 | 8 to 12 months |
| Draft guideline | June to December 2027 | 6 months |
| Publication consultation / NHMRC release | August to December 2027 | 6 months |
| Dissemination / Implementation | March 2028 | 8 months |
