Australia

Australia

There are an estimated 92,000 to 598,000 people in Australia with chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), or CFS/ME (ME/CFS) based on prevalence ranges of 0.4-2.4%, depending on which definition of the condition is used.

Using the International Consensus Criteria (ICC) for ME (0.4-1%) and Australian Bureau of Statistics population figures, there are between 100,000 and 250,000 Australians with ME.

Australian patients use the terms chronic fatigue syndrome, ME/CFS, ME, or immune dysfunction illness depending on the criteria they meet. The Australian CFS guidelines state it is a 'fatigue spectrum' rather than a distinct disease.

Medical guidelines

The 2002 Australian CFS guidelines are widely criticized and there are vast differences between Australian CFS guidelines and the ICC of ME.

The 2002 Australian guidelines were written by the National Health and Medical Research Council (NHRMC) fellowship recipient Prof Andrew Lloyd, who sits on the review committees for NHMRC grant applications.

The NHMRC website lists resources for clinicians, including the, Canadian Consensus Criteria (CCC) and Institute of Medicine report's SEID criteria , but also including recommendations for exercise, cognitive behavioral therapy (CBT) and antidepressants.

A government-appointed advisory committee is in the process of recommending whether new clinical guidelines should be developed to replace the outdated Australian guidelines. Their draft report came out in December 2018.

Some Australians are lobbying for the ICC to be adopted. Some suggested letter templates have been offered for use here and here.

Patient groups

The ICC is listed by all organizations, except Western Australia's ME/CFS/Lyme Association, which lists the CCC.

One of the NSW websites lists the ICC, IACFS/ME Clinical, the 2006 Paediatric Criteria, and the South Australian ME/CFS Guidelines but is not clear on which one it endorses.

Some state organizations, National Centre for Neuroimmunology and Emerging Diseases (NCNED) and some patients are lobbying for the 2002 RACP Australian guidelines to be replaced with the ICC.

Australian medical associations

• The Royal Australasian College of Physicians (RACP) published guidelines in 2002, in the Australian Medical Journal.
• The Royal Australasian College of General Practitioners (RACGP) published a guideline in 2015 which recommends graded exercise therapy (GET). Their magazine Australian Family Practitioner (AFP) has published articles about ME/CFS, including a 2013 article that recommends GET and CBT.
• The Australian Medical Association (AMA) website recommends GET.

National health department

• Australian Government Department of Health
• Direct information page on CFS from Department of Health

National Health and Medical Research Council

The NHMRC funds health and medical research, and develops health advice & guidelines. It is part of the Australian Government Department of Health.

In 2018 the NHMRC appointed an ME and CFS advisory committee, including Andrew Lloyd, Suzanne Broadbent, Sonya Marshall-Gradisnik, and Kathy Rowe.

The committee is advising the government on current research, gaps in research and whether the 2002 clinical guidelines for doctors should be revised.The NHMRC did not put out a call for applications for positions on the advisory committee, unlike the US Department of Health and Human Services (HHS) does for it’s former Chronic Fatigue Syndrome Advisory Committee (CFSAC). Nor did it follow the UK example and hold workshops with stakeholders before recruiting a guideline committee.

Draft report

Feb 18, 2019, Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer

The National Health and Medical Research Council (NHMRC) Myalgic encephalomyelitis and Chronic fatigue syndrome (ME/CFS) Advisory Committee (the Committee) is releasing the draft ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer (the draft Report) for public consultation. The Committee invites the Australian community to provide comments on its draft Report (Attachment A) before finalising and providing it to NHMRC’s CEO. The Committee’s report to the CEO will help to inform decisions about what NHMRC can do given its dual role in supporting health and medical research and developing evidence based health advice for the Australian community.

State and territory health departments

• Victoria - Better Health - Chronic Fatigue Syndrome - information for the public
• ACT
• NSW
• South Australia
• Northern Territory
• Queensland
• Tasmania
• Western Australia

Health insurance

Government health insurance

The Australian government subsidises most medical appointments, some hospital services, and some medications.

• Medicare
• Medicare Safety Net
• Pharmaceutical Benefits Scheme

Social security and disability benefits

• A Disability Support Pension is available through Centrelink for people meeting strict criteria of dysfunction.
• National Disability Insurance Scheme

Access to care

((How many hospitals & doctors, which diagnose and treat ME (estimate):)) ((Rehabilitation offers for ME sufferers: ))

Patient groups

• ME/CFS Australia Ltd (population 25.7 million)
• Emerge Australia (formerly ME/CFS Victoria, Tasmania & Northern Territory) which has 3 paid staff (population 6.5 million)
• ACT ME/Chronic Fatigue Syndrome Society which has one paid staff member (population 0.4 million)
• ME/CFS Australia (SA) Inc
• ME/CFS/FM Support Association, Queensland
• ME/CFS and Lyme Society of WA
• The ME/CFS & FM Association, NSW
• Hummingbirds' Foundation for ME established by Jodi Bassett
• ME Australia a collective network across Australia
• Change for ME Australia, an online collective

Research

Australian criteria for chronic fatigue syndrome

• 1990, Prevalence of chronic fatigue syndrome in an Australian population (Abstract)

The diagnostic criteria developed by Lloyd et al. (1990) are colloquially known as the Australian criteria for chronic fatigue syndrome due to the fact they were developed and published in Australia; the Australian criteria are widely recognized as extremely broad criteria, and risk incorrectly diagnosing a person with chronic fatigue syndrome in comparison to most other criteria.

Notable studies

• 2016, Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome
• 2016, Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy

Research results

• 2015: Australian Research into ME/CFS in Adolescents
• 2016: Australian Breakthrough on Diagnostic Blood Test

• 2018: How much can people with ME stand?

Research funding

• 2015: Australian Senator Questions Government on Lack of Action on ME
• 2016: The Australian Health Department Answers Questions on ME
• 2016: Australian Health Dept Pins its Hopes on NIH Research
• 2017: Australia's Health Minister refuses to stop funding trial of 'incredibly bad' treatment

• 2018: Friends in Australia's Parliament for people with ME and chronic fatigue syndrome
• 2018: Australia's medical research council questioned on ME and CFS committee

Research groups

• National Centre for Neuroimmunology and Emerging Diseases (NCNED)
• ME/CFS Discovery Research Network
• Consortium Health International for Myalgic Encephalomyelitis (CHIME)
• Murdoch Childrens Research Institute
• Victoria University
• Bio21 Institute, Melbourne University

Researchers

• Christopher Armstrong
• Dorothy Bruck
• Henry Butt
• Elaine DeFreitas
• Paul Gooley
• Geoffrey Hallmann
• Melinda Jackson
• Donald Lewis
• Brett Lidbury
• Andrew Lloyd
• Neil McGregor
• Michael Maes
• Sarah Knight
• Sonya Marshall-Gradisnik
• Donald Staines
• Amy Wallis

Clinicians

• Biomedical clinicians: Donald P Lewis (VIC), Rashmi Cabena (VIC), Richard Schloeffel (NSW), Mark Donohoe (NSW)
• GET/CBT clinicians: Michael Oldmeadow (VIC), Andrew Lloyd (NSW)

Notable patients

• Alastair Lynch
• Alem Matthees
• 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.
• Andrew Bretherton
• James McDonald
• Jodi Bassett
• Johanna Griggs
• Laura Dundovic
• Leigh Hatcher
• Geoffrey Hallmann
• Linley Frame
• Nadine Neumann
• Matthew Nicholson
• Rhyce Shaw
• Shelley Taylor-Smith
• Simon Del Favero

Learn more

• 2016, Rethinking chronic fatigue syndrome
• 2018, To the #MillionsMissing, something remarkable is happening
• ME Australia

See also

• 1949-53 Adelaide outbreak
• List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks
• Scott Ludlam
• Donald Staines
• Sonya Marshall-Gradisnik

See chronic fatigue syndrome.

See myalgic encephalomyelitis.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

See Chronic fatigue syndrome advisory committee.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.