Australia
There are an estimated 92,000 to 598,000 people in Australia with chronic fatigue syndrome, ME or CFS/ME or ME/CFS (based on prevalence ranges of 0.4-2.4%,[1] depending on which definition of the condition is used).
In Australia, most doctors use the name Chronic Fatigue Syndrome for diagnosis.
Australian patients use the terms Chronic Fatigue Syndrome, ME/CFS, CFS/ME, Myalgic Encephalomyelitis or immune dysfunction illness.
Medical guidelines[edit | edit source]
There are no current national clinical guidelines on the NHMRC website.
The 2002 Australian guidelines are used by National Health and Medical Research Council (NHRMC) fellowship recipient Prof Andrew Lloyd, who sits on the review committees for NHMRC grant applications.[2]
Emerge Australia is in the process of recommending new clinical guidelines to replace the outdated Australian guidelines.[3]
Some patients are lobbying for the International Consensus Criteria to be adopted. Some suggested letter templates have been offered for use here and here.
Patient groups[edit | edit source]
The International Consensus Primer is listed by all organisations, except Western Australia's ME/CFS/Lyme Association, which lists the Canadian Consensus Criteria.
One of the NSW websites lists the International Consensus Primer, IACFS/ME Clinical, the 2006 Paediatric Criteria[4], and the South Australian ME/CFS Guidelines[5] but is not clear on which one it endorses.
Some state organisations, NCNED and some patients are lobbying[6] for the 2002 RACP Australian guidelines[7] to be replaced with the International Consensus Criteria.
Australian medical associations[edit | edit source]
- The Royal Australasian College of Physicians (RACP) published guidelines in 2002, in the Australian Medical Journal.[7]
- The Royal Australasian College of General Practitioners (RACGP) published a guideline in 2015 which recommends Graded Exercise Therapy.[8] Their magazine Australian Family Practitioner (AFP) has published articles about ME/CFS,[9] including a 2013 article that recommends Graded exercise therapy and Cognitive behavioral therapy.[10]
- The Australian Medical Association (AMA) website recommends Graded Exercise Therapy.[11]
National health department[edit | edit source]
National Health and Medical Research Council[edit | edit source]
The NHMRC funds health and medical research, and develops health advice & guidelines. It is part of the Australian Department of Health.
State and territory health departments[edit | edit source]
- Victoria - Better Health - Chronic Fatigue Syndrome - information for the public
- ACT
- NSW
- South Australia
- Northern Territory
- Queensland
- Tasmania
- Western Australia
Health insurance[edit | edit source]
Government health insurance[edit | edit source]
The Australian government subsidises most medical appointments, some hospital services, and some medications.
Private health insurance[edit | edit source]
Social security and disability benefits[edit | edit source]
- A Disability Support Pension is available through Centrelink for people meeting strict criteria of dysfunction.
Access to care[edit | edit source]
((How many hospitals & doctors, which diagnose and treat ME (estimate):)) ((Rehabilitation offers for ME sufferers: ))
Patient groups[edit | edit source]
There is no national ME or CFS organisation in Australia, however there are patient organisations in each state and territory.
- Emerge Australia (incl Victoria, Tasmania & Northern Territory but has members from all over Australia)
- Change for ME Australia, an online collective
- ACT ME/Chronic Fatigue Syndrome Society
- ME/CFS Australia (SA) Inc
- ME/CFS/FM Support Association, Queensland
- ME/CFS and Lyme Society of WA
- The ME/CFS & FM Association, NSW
Research[edit | edit source]
Notable studies[edit | edit source]
- Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome (2016)
- 2016, Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy
Research results[edit | edit source]
- 2016: Australian Breakthrough on Diagnostic Blood Test[12]
- 2015: Australian Research into ME/CFS in Adolescents[13]
Research funding[edit | edit source]
- 2016: Australian Health Dept Pins its Hopes on NIH Research[14]
- 2016: The Australian Health Department Answers Questions on ME[2]
- 2015: Australian Senator Questions Government on Lack of Action on ME[15]
Research groups[edit | edit source]
- National Centre for Neuroimmunology and Emerging Diseases (NCNED)
- Murdoch Childrens Research Institute
- Victoria University
- Bio21 Institute, Melbourne University
Researchers[edit | edit source]
- Christopher Armstrong
- Dorothy Bruck
- Henry Butt
- Elaine DeFreitas
- Paul Gooley
- Melinda Jackson
- Donald Lewis
- Brett Lidbury
- Andrew Lloyd
- Neil McGregor
- Michael Maes
- Sarah Knight
- Sonya Marshall-Gradisnik
- Donald Staines
- Amy Wallis
Clinicians[edit | edit source]
- Biomedical clinicians: Donald P Lewis (VIC), Rashmi Cabena (VIC), Richard Schloeffel (NSW)
- GET/CBT clinicians: Michael Oldmeadow (VIC), Andrew Lloyd (NSW)
Notable patients[edit | edit source]
- Alison Hunter, died 1996, aged 19, from complications related to ME/CFS. The Alison Hunter Memorial Foundation was established in her name in 1998, to raise much needed funding for research into ME/CFS, as well as raising awareness and advocating for the needs of people with ME/CFS. The Alison Hunter Foundation established a partnership with the National Centre for Neuroimmunology and Emerging Diseases (NCNED), at Griffith University (Queensland), in 2014, and has since ceased operating as an independent charity, instead focussing on supporting the research being undertaken at NCNED.[16]
- Jodi Bassett
- Laura Dundovic
- Leigh Hatcher
- Linley Frame
- Johanna Griggs
- Alastair Lynch
- James McDonald
- Alem Matthees
- Nadine Neumann
- Matthew Nicholson
- Rhyce Shaw
- Shelley Taylor-Smith
Learn more[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
- ↑ Carruthers, B M; van de Sande, M I; De Meirleir, Kenny L; Klimas, Nancy G; Broderick, G; Mitchell, T; Staines, Donald; Powles, A C P; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, B; Bell, David S; Carlo-Stella, N; Chia, John; Darragh, A; Jo, D; Lewis, Donald P; Light, Alan R; Marshall-Gradisnik, Sonya; Mena, I; Mikovits, J A; Miwa, K; Murovska, M; Pall, M L; Stevens, Staci R (August 22, 2011), "Myalgic encephalomyelitis: International Consensus Criteria", Journal of Internal Medicine, 270 (4): 327–338, doi:10.1111/j.1365-2796.2011.02428.x, PMID 21777306
- ↑ 2.0 2.1 #MEAction; Nimmo, Sasha (January 20, 2016), "Australian Health Dept Answers Questions on ME", #MEAction
- ↑ reference needed
- ↑ Jason, Leonard A; Jordan, Karen; Miike, Teruhisa; Bell, David S; Lapp, Charles; Torres-Harding, Susan; Rowe, Kathy; Gurwitt, Alan; De Meirleir, Kenny; Van Hoof, Elke LS (2006), "A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome", Journal of Chronic Fatigue Syndrome, 13 (2–3): 1-44, doi:10.1300/J092v13n02_01
- ↑ South Australian Department of Human Services; University of Adelaide; ME/CFS Society of South Australia (2004), ME/CFS Guidelines: Management Guidelines for General Practitioners (PDF), ISBN 0 7308 9334 0
- ↑ #MEAction; Nimmo, Sasha (March 14, 2016), "Australians: Ask the Medical Research Council to Fund Studies", #MEAction
- ↑ 7.0 7.1 Victoria Toulkidis; et al. (2002), "Supplement: Chronic fatigue syndrome", Med J Aust 2002, 176 (9): 17-55
- ↑ Royal Australasian College of General Practitioners (RACGP) (March 2015), Graded exercise therapy: chronic fatigue syndrome
- ↑ "articles about Chronic Fatigue Syndrome", Australian Family Physician
- ↑ Megan Arroll, Bruce Arroll (April 2013), "Chronic fatigue syndrome: A patient centred approach to management", Australian Family Practitioner
- ↑ Australian Medical Association (May 3, 2004), Chronic fatigue sufferers beat blues with exercise
- ↑ #MEAction; Nimmo, Sasha (March 3, 2016), "Australian Breakthrough on Diagnostic Blood Test", #MEAction
- ↑ #MEAction; Nimmo, Sasha (August 19, 2015), "Australian Research into ME/CFS in Adolescents", #MEAction
- ↑ #MEAction; Nimmo, Sasha (February 12, 2016), "Australian Health Dept Pins its Hopes on NIH Research", #MEAction
- ↑ #MEAction; Nimmo, Sasha (November 16, 2015), "Australian Senator Questions Government on Lack of Action on ME", #MEAction
- ↑ Alison Hunter Memorial Foundation (website)