The National Health and Medical Research Council’s (NHMRC) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Guideline Development Committee (ME/CFS GDC) held its inaugural meeting on Thursday 28 August 2025 to commence development of clinical practice guidelines for ME/CFS and related conditions, including Long COVID, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia.
Date: Thursday 28 August 2025
Time: 12:30 pm – 2:30 pm AEST
Location: Virtual meeting
The ME/CFS GDC is established as a section 39 committee under the NHMRC Act 1992 and includes clinicians, researchers, individuals with lived experience and people with experience in reviewing evidence and developing guidelines. The ME/CFS GDC is tasked with overseeing the development of clinical practice guidelines for the diagnosis and management of ME/CFS and related conditions in primary care settings.
Key highlights
- Members noted NHMRC’s commitment to minimising actual or perceived conflicts of interest in the development of the ME/CFS guidelines. The ME/CFS GDC reviewed declared interests with some members updating their disclosures of interest. No management strategies were required.
- Members noted that the ME/CFS Steering Committee had been established to provide advice on GDC composition, scope of the ME/CFS guideline and they also provided advice on the ME/CFS scoping survey which was open from 21 February to 27 April 2025.
- Members noted NHMRC’s role in guideline development, including governance structures and legislated responsibilities.
- Members shared initial perspectives on priority areas for inclusion in the ME/CFS Clinical Practice Guidelines. Key themes discussed included:
- early intervention
- the need for consistent and contextually relevant diagnostic criteria
- core symptoms, such as post exertional malaise
- the value of holistic, patient-centred models of care
- the severity spectrum of ME/CFS
- the impact of ME/CFS on young people.
Next steps
The next meeting of the ME/CFS GDC is planned for late October 2025 and will focus on gaining a shared understanding of the GRADE (Grading of Recommendations Assessment, Development and Evaluation) methods approach.