NATIONAL ADVISORY ADVOCACY COUNCIL FOR ME/CFS RESEARCH LTD.
The National Advisory Advocacy Council for ME/CFS Research Ltd. (NAAC) is an Australian nonprofit organisation focused on advancing research and healthcare practices for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Established with a mission to bridge gaps between research, policy, and patient care, the NAAC operates as a collaborative platform for stakeholders including researchers, healthcare practitioners, and individuals affected by ME/CFS.

Mission and Activities

The NAAC’s mission is to facilitate relevant, high-quality research and translate findings into improved healthcare practices, education, and policy. Key activities include:

• Advocacy: Raising awareness among policymakers and health services to improve care pathways for ME/CFS patients[3][4].
• Research Collaboration: Connecting researchers, clinicians, and consumers to prioritize patient-centered outcomes[1][2].
• Education: Providing updates on ME/CFS research literature through monthly reviews and promoting best practices[1].

Governance and Values

The council operates under values of shared understanding, respect, transparency, and commitment[1]. Its membership includes researchers, healthcare professionals, educators, and individuals with lived experience of ME/CFS[1][2]. The NAAC has contributed to federal inquiries, including submissions to the Disability Royal Commission in 2021[4].

Historical Context

The NAAC emerged against a backdrop of limited recognition for ME/CFS as a serious medical condition. It emphasizes the urgency of research translation, exemplified by its references to cases such as Merryn Crofts, a young individual who died in 2017 due to complications from severe ME/CFS[1]. The organisation advocates for systemic changes to address gaps in healthcare access and research funding[1][4].

(This article does not represent an official entry and is provided for informational purposes only.)

[1] https://naac-mecfs.org [2] https://www.acnc.gov.au/charity/charities/5415a72c-a656-ec11-8f8f-00224810d555/profile [3] https://www.acnc.gov.au/charity/charities/5415a72c-a656-ec11-8f8f-00224810d555/documents/c23ae5a2-78bf-ee11-9078-002248935564 [4] https://disability.royalcommission.gov.au/publications/sub10001768-national-advocacy-advisory-council-me-cfs-research-ltd [5] https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-working-group-mecfs-research