ME/CFS Australia Ltd

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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.[1]

ME/CFS Australia Ltd is a registered charity, non-profit organization that has been functioning as a public benevolent institution.[2][1]

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[edit | edit source]

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.[1] 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.[3]

Services[edit | edit source]

Notable people[edit | edit source]

Directors[edit | edit source]

  • Chair - Vacant
  • Troy Johnson – Secretary/Treasurer
  • Penelope McMillian – Director
  • Cathy Powell - Director
  • Vacant – NSW
  • Lyn Wilson - Qld
  • Carla Talbot - SA
  • Terry Visser - WA[4]

Member organisations[edit | edit source]

Patrons[edit | edit source]

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

Medical advisors[edit | edit source]

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

Advocacy[edit | edit source]

Research/Notable studies[edit | edit source]

History[edit | edit source]

ME/CFS Australia Ltd was founded in 1999.[1] 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.[6]

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[7] and as a member of the Independent Advisory Group reviewing the Cochrane review of Graded Exercise and ME/CFS.[8] 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.[9]

Funding[edit | edit source]

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

Interviews and articles[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 1.2 1.3 "Home". ME/CFS Australia Ltd. Retrieved January 9, 2022.
  2. "Charity Register". ACNC. Retrieved January 9, 2022.
  3. "Disability Royal Commission". ME/CFS Australia Ltd. Retrieved June 14, 2022.
  4. "About Us". ME/CFS Australia Ltd. Retrieved March 2, 2023.
  5. "About Us". ME/CFS Australia Ltd. Retrieved January 9, 2022.
  6. "ME/CFS/FM Reference". ME/CFS/FM Support Association QLD Inc. Retrieved June 14, 2022.
  7. "ME/CFS Advisory Committee Report to NHMRC Chief Executive Officer". NHMRC. Retrieved June 14, 2022.
  8. "Independent Advisory Group (IAG): biographies and declarations of interest (June 2021)". Cochrane. Retrieved June 14, 2022.
  9. "ME/ CFS South Australia Inc". Facebook. Retrieved June 14, 2022.