ME/CFS Australia Ltd

ME/CFS Australia Ltd is the peak body for ME/CFS in Australia, with six member organisations from throughout Australia. It aims to represent these member organisations and all Australians affected by ME/CFS and works at the national level with affiliations from state and other ME/CFS organizations.

ME/CFS Australia Ltd is a registered charity, non-profit organization that has been functioning as a public benevolent institution.

Every state and territory ME/CFS association has a Director's seat on the board open to them to participate in the decision-making of the national body. ME/CFS Australia welcomes and encourages all state organisations to join with them in moving their national agenda forward.

ME/CFS Australia has a strong history of participating in the political debates surrounding issues relevant to ME/CFS. In 1998, 1999 and 2001, ME/CFS Australia was actively involved in the organisation and hosting of the Newcastle/Sydney based Clinical and Scientific Meetings on ME/CFS.

Aims

ME/CFS Australia seeks to improve the quality of life of those with ME/CFS. One of its key goals is to influence national health care decision makers to improve the care and treatment of people with ME/CFS. ME/CFS Australia has also sought to improve the ability of people with ME/CFS and their carers to access various welfare benefits and supports such as the National Disability Insurance Scheme and Disability Support Pension. In recent years, the Disability Royal Commission was created, and ME/CFS Australia sought to encourage those with ME/CFS and their carers to make submissions and provided ME/CFS specific Disability Royal Commission Information to assist in the process.

Notable people

Directors

• Chair - Sarah Fitzgerald
• Troy Johnson – Secretary/Treasurer
• Penelope McMillian – Director
• Cathy Powell - Director
• Vacant – NSW
• Lyn Wilson - Qld
• Craig Pickering - SA
• Terry Visser - WA

Member organisations

• ME/CFS & FM Association NSW Inc – New South Wales
• Far North Coast ME/CFS Association Inc – New South Wales
• ME/CFS/FM Support Association QLD Inc – Queensland 
• ME/CFS South Australia Inc – South Australia 
• ME/CFS and Lyme Association of WA – Western Australia
• Bridges & Pathways Institute – South Australia

Patrons

ME/CFS Australia does not currently have an appointed patron.

Medical advisors

ME/CFS Australia does not currently have an appointed medical advisor.

Advocacy

• Geoffrey Hallmann, (31 March 2021), 'Inquiry into Independent Assessments: Submission 317', Joint Standing Committee on the National Disability Insurance Scheme
• Hansard, (29 June 2021), 'Geoffrey Hallmann, ME/CFS Australia - Submission' Joint Standing Committee on the National Disability Insurance Scheme'
• Geoffrey Hallmann, (30 July 2021), 'Purpose, Intent and Adequacy of the Disability Support Pension', Senate Community Affairs References Committee
• Hansard, (1 November 2021), 'Geoffrey Hallmann, ME/CFS Australia - Submission', Community Affairs References Committee - Purpose, intent and adequacy of the disability support pension
• The Senate, Community Affairs Reference Committed, (February 2022), 'Purpose, Intent and Adequacy of the Disability Support Pension', "2.23 The Chair of ME/CFS Australia, Mr Geoffrey Hallman, argued that, on the basis that a therapy may lessen an applicant’s disability, these individuals are frequently required to undergo therapies which actually worsen their impairments."

Research/Notable studies

• Penelope Mcmillan, Penelope Del Fante, Geoffrey Hallmann, Jade Barclay, (August 2021) 'Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?' 2021 IACFSME Virtual Conference
• Geoffrey Hallmann, (November 2021) 'Australian ME/CFS Research: A Primer for Social and Public Health Issues', 2021 NCNED International ME/CFS Conference, Seaworld Nara Resort, Gold Coast, Qld, Australia

History

ME/CFS Australia Ltd was founded in 1999. The organisation was originally located in offices Melbourne, Victoria. The organisation was created for the purpose of providing peak body representation on the national stage. In the early years of its operations, the organisation was actively involved in advocacy for patients with ME/CFS. In 1998, 1999 and 2001 the organisation was actively involved, along with the Alison Hunter Memorial Foundation, with the three Sydney/Newcastle based International Clinical and Scientific Meetings. The Chair, Simon Molesworth, was actively involved in advocating against the 1997 Draft RACP CFS Guidelines and 2002 RACP CFS Guidelines.

Between 2014 and 2016, ME/CFS Australia's operations wound back. In 2016 a new board came forward and have revitalised and refocused the organisation to focus on its core objectives of advocacy, education and research. In recent years the organisation has been involved in such activities as the NHMRC ME/CFS Advisory Committee Report to the CEO and as a member of the Independent Advisory Group reviewing the Cochrane review of Graded Exercise and ME/CFS. Member organisation, ME/CFS Australia (SA), submitted a targeted call for research to the NHMRC in 2016 which subsequently culminated in $3 million being allocated to various researchers around Australia.

Funding

ME/CFS Australia is a charity funded by way of bequests and donations.

Online presence

• Website
• Twitter
• Facebook page
• YouTube channel
• Instagram
• LinkedIn

See also

• Australia

Learn more

• ME/CFS Australia website

See myalgic encephalomyelitis.

See chronic fatigue syndrome.