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

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%,[1] 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.[2]

Medical guidelines[edit | edit source]

The 2002 Australian CFS guidelines are widely criticized[3][4][5] 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.[6]

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.[7]

A government-appointed advisory committee is in the process of recommending whether new clinical guidelines should be developed to replace the outdated Australian guidelines.[8] Their draft report came out in December 2018.

Some Australians are lobbying for the ICC to be adopted[9]. Some suggested letter templates have been offered for use here and here.

Patient groups[edit | edit source]

The ICC is listed by all organizations, except Western Australia's ME/CFS/Lyme Association, which lists the CCC.[10]

One of the NSW websites lists the ICC, IACFS/ME Clinical, the 2006 Paediatric Criteria[11], and the South Australian ME/CFS Guidelines[12] but is not clear on which one it endorses.[citation needed]

Some state organizations, National Centre for Neuroimmunology and Emerging Diseases (NCNED) and some patients are lobbying[13] for the 2002 RACP Australian guidelines[14] to be replaced with the ICC.[citation needed]

Australian medical associations[edit | edit source]

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 Government Department of Health.

In 2018 the NHMRC appointed an ME and CFS advisory committee[20], 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[edit | edit source]

Feb 18, 2019, Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer[21]

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.[21]

State and territory health departments[edit | edit source]

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]

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]

Research[edit | edit source]

Australian criteria for chronic fatigue syndrome[edit | edit source]

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[edit | edit source]

Research results[edit | edit source]

Research funding[edit | edit source]

Research groups[edit | edit source]

Researchers[edit | edit source]

Clinicians[edit | edit source]

Notable patients[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. Carruthers, B M; van de Sande, M I; De Meirleir, Kenny L; Klimas, Nancy G; Broderick, G; Mitchell, T; Staines, Donald; Powles, ACP; 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. "Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | NHMRC". Retrieved March 2, 2019.
  3. "ME/CFS Australia (SA) Inc: Letter to eMJA (March 7, 2002)". Retrieved December 5, 2018.
  4. "Alison Hunter Memorial Foundation: Supporting Biomedical Research Into Myalgic Encephalomyelitis/ Chronic Fatigue Sydnrome ME/CFS - Guidelines". Retrieved December 5, 2018.
  5. "Difference between Australian chronic fatigue syndrome guidelines and ME". ME Australia. November 30, 2018. Retrieved December 5, 2018.
  6. 6.0 6.1 #MEAction; Nimmo, Sasha (January 20, 2016), "Australian Health Dept Answers Questions on ME", #MEAction
  7. "Australian committee on ME and chronic fatigue syndrome nearly finished report". ME Australia. September 26, 2018. Retrieved October 2, 2018.
  8. "Australian government's ME and CFS advisory committee". ME Australia. April 23, 2018. Retrieved October 2, 2018.
  9. "Australia: Ask the medical research council to fund studies - #MEAction". #MEAction. March 14, 2016. Retrieved October 2, 2018.
  10. "Donate to ME/CFS and Lyme Association of WA". Mycause. Retrieved March 2, 2019.
  11. 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
  12. 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
  13. #MEAction; Nimmo, Sasha (March 14, 2016), "Australians: Ask the Medical Research Council to Fund Studies", #MEAction
  14. 14.0 14.1 Victoria Toulkidis; et al. (2002), "Supplement: Chronic fatigue syndrome", Med J Aust 2002, 176 (9): 17–55
  15. Royal Australasian College of General Practitioners (RACGP) (March 2015), Graded exercise therapy: chronic fatigue syndrome
  16. "articles about Chronic Fatigue Syndrome", Australian Family Physician
  17. Megan Arroll, Bruce Arroll (April 2013), "Chronic fatigue syndrome: A patient centred approach to management", Australian Family Practitioner
  18. Australian Medical Association (May 3, 2004), Chronic fatigue sufferers beat blues with exercise
  19. "Chronic fatigue syndrome". Health Direct. Australian Government Department of Health.
  20. "Australian government's ME and CFS advisory committee". ME Australia. April 23, 2018. Retrieved October 2, 2018.
  21. 21.0 21.1 "Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer | NHMRC Public Consultations". February 18, 2019. Retrieved March 2, 2019.
  22. Lloyd, Andrew R.; Hickie, Ian; Boughton, Clement R.; Spencer, Owen; Wakefield, Denis (November 5, 1990). "Prevalence of chronic fatigue syndrome in an Australian population". The Medical Journal of Australia. 153 (9): 522–528. ISSN 0025-729X. PMID 2233474.
  23. Staines, Donald; Smith, Pete; Johnston, Samantha; Chacko, Anu; Huth, Teilah; Marshall-Gradisnik, Sonya (March 31, 2016). "Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome". The Application of Clinical Genetics. Retrieved March 2, 2019.
  24. Ankeny, Rachel A.; Mackenzie, Fiona J. (2016). Dodds, Susan; Ankeny, Rachel A. (eds.). Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy. The International Library of Ethics, Law and Technology. Cham: Springer International Publishing. pp. 227–243. doi:10.1007/978-3-319-32240-7_11. ISBN 9783319322407.
  25. #MEAction; Nimmo, Sasha (August 19, 2015), "Australian Research into ME/CFS in Adolescents", #MEAction
  26. #MEAction; Nimmo, Sasha (March 3, 2016), "Australian Breakthrough on Diagnostic Blood Test", #MEAction
  27. "How much can people with ME stand?". ME Australia. August 6, 2018. Retrieved October 2, 2018.
  28. #MEAction; Nimmo, Sasha (November 16, 2015), "Australian Senator Questions Government on Lack of Action on ME", #MEAction
  29. #MEAction; Nimmo, Sasha (February 12, 2016), "Australian Health Dept Pins its Hopes on NIH Research", #MEAction
  30. "Australia's medical research council questioned on ME and CFS committee". ME Australia. June 15, 2018. Retrieved October 2, 2018.
  31. "Friends in Australia's parliament for people with ME and chronic fatigue syndrome". ME Australia. August 7, 2018. Retrieved October 2, 2018.
  32. "Australia's medical research council questioned on ME and CFS committee". ME Australia. June 15, 2018. Retrieved October 2, 2018.
  33. "Alison Hunter Memorial Foundation", Alison Hunter Memorial Foundation