Australia: Difference between revisions

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
m (Text replacement - " \|" to " |")
m (Text replacement - "|journal=" to " | journal = ")
 
(198 intermediate revisions by 2 users not shown)
Line 1: Line 1:
[[File:Australia_flag.svg.png|320px|right|thumb|'''Australia''']]
[[File:Australia_flag.svg.png|320px|right|thumb|'''Australia''']]
<!--- to avoid edit wars, please refer to the 'Discussion' page --->
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%,<ref name="ICC2011criteria" /> depending on which definition of the condition is used.  
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%,<ref name="ICC2011criteria" /> depending on which definition of the condition is used.  


Using the [[International Consensus Criteria]] (ICC) for [[Myalgic encephalomyelitis|ME]] (0.4-1%) and Australian Bureau of Statistics population figures, there are between 100,000 and 250,000 Australians with ME.
Using the [[International Consensus Criteria]] (ICC) for [[Myalgic encephalomyelitis|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 [[Autoimmune hypothesis|immune dysfunction illness]] depending on the criteria they meet. The Australian [[Chronic fatigue syndrome|CFS]] guidelines state it is a '[[fatigue]] spectrum' rather than a distinct disease.<ref>{{Cite web|url=https://nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome|title=Myalgic Encephalomyelitis and Chronic Fatigue Syndrome {{!}} NHMRC|website=nhmrc.gov.au|language=en|access-date=2019-03-02}}</ref>
Australian patients use the terms chronic fatigue syndrome, ME/CFS, ME, or [[Autoimmune hypothesis|immune dysfunction illness]] depending on the criteria they meet. The Australian [[Chronic fatigue syndrome|CFS]] guidelines state it is a '[[fatigue]] spectrum' rather than a distinct disease.<ref>{{Cite web | url = https://nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome | title = Myalgic Encephalomyelitis and Chronic Fatigue Syndrome {{!}} NHMRC | website = nhmrc.gov.au|language=en | access-date = 2019-03-02}}</ref>  


==Medical guidelines==
==Medical guidelines==


The 2002 Australian CFS guidelines are widely criticized<ref>{{Cite web|url=http://sacfs.asn.au/about/guidelines/letter_mar_7.htm|title=ME/CFS Australia (SA) Inc: Letter to eMJA (March 7, 2002)|website=sacfs.asn.au|access-date=2018-12-05}}</ref> <ref>{{Cite web|url=http://www.ahmf.org/guidelines.html|title=Alison Hunter Memorial Foundation: Supporting Biomedical Research Into Myalgic Encephalomyelitis/ Chronic Fatigue Sydnrome ME/CFS - Guidelines|website=www.ahmf.org|access-date=2018-12-05}}</ref> <ref>{{Cite web|url=https://meaustralia.net/2018/11/30/difference-between-australian-chronic-fatigue-syndrome-guidelines-and-me/|title=Difference between Australian chronic fatigue syndrome guidelines and ME|date=2018-11-30|website=ME Australia|language=en|access-date=2018-12-05}}</ref> and there are vast differences between Australian CFS guidelines and the [[International Consensus Criteria|ICC]] of ME.
The 2002 Australian CFS guidelines are widely criticized<ref>{{Cite web | url = http://sacfs.asn.au/about/guidelines/letter_mar_7.htm | title = ME/CFS Australia (SA) Inc: Letter to eMJA (March 7, 2002) | website = sacfs.asn.au | access-date = 2018-12-05}}</ref><ref>{{Cite web | url = http://www.ahmf.org/guidelines.html | title = Alison Hunter Memorial Foundation: Supporting Biomedical Research Into Myalgic Encephalomyelitis/ Chronic Fatigue Sydnrome ME/CFS - Guidelines | website = ahmf.org | access-date = 2018-12-05}}</ref><ref>{{Cite web | url = https://meaustralia.net/2018/11/30/difference-between-australian-chronic-fatigue-syndrome-guidelines-and-me/ | title = Difference between Australian chronic fatigue syndrome guidelines and ME | date = 2018-11-30 | website = ME Australia|language=en | access-date = 2018-12-05}}</ref> and there are vast differences between Australian CFS guidelines and the [[International Consensus Criteria|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.<ref name="#MEACTION20160120ahd" />
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.<ref name="#MEACTION20160120ahd" />


The NHMRC website lists resources for clinicians, including the, [[Canadian Consensus Criteria]] (CCC) and [[Institute of Medicine report]]'s [[Systemic Exertion Intolerance Disease|SEID]] criteria , but also including recommendations for [[exercise]], [[cognitive behavioral therapy]] (CBT) and [[Antidepressant|antidepressants]].<ref>{{Cite news|url=https://meaustralia.net/2018/09/26/australian-government-committee-on-me-and-chronic-fatigue-syndrome/|title=Australian committee on ME and chronic fatigue syndrome nearly finished report|date=2018-09-26|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
The NHMRC website lists resources for clinicians, including the, [[Canadian Consensus Criteria]] (CCC) and [[Institute of Medicine report]]'s [[Systemic Exertion Intolerance Disease|SEID]] criteria , but also including recommendations for [[exercise]], [[cognitive behavioral therapy]] (CBT) and [[Antidepressant|antidepressants]].<ref>{{Cite news |url =https://meaustralia.net/2018/09/26/australian-government-committee-on-me-and-chronic-fatigue-syndrome/ | title = Australian committee on ME and chronic fatigue syndrome nearly finished report | date = 2018-09-26|work=ME Australia | access-date = 2018-10-02|language=en-US}}</ref>


A government-appointed advisory committee is in the process of recommending whether new clinical guidelines should be developed to replace the outdated Australian guidelines.<ref>{{Cite news|url=https://meaustralia.net/2018/04/23/australian-governments-me-and-cfs-advisory-committee/|title=Australian government’s ME and CFS advisory committee|date=2018-04-23|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref> Their draft report came out in December 2018.
A government-appointed advisory committee is in the process of recommending whether new clinical guidelines should be developed to replace the outdated Australian guidelines.<ref>{{Cite news |url =https://meaustralia.net/2018/04/23/australian-governments-me-and-cfs-advisory-committee/ | title = Australian government’s ME and CFS advisory committee | date = 2018-04-23|work=ME Australia | access-date = 2018-10-02|language=en-US}}</ref> Their draft report came out in December 2018.


Some Australians are lobbying for the ICC to be adopted<ref>{{Cite news|url=https://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/|title=Australia: Ask the medical research council to fund studies - #MEAction|date=2016-03-14|work=#MEAction|access-date=2018-10-02|language=en-US}}</ref>. Some suggested letter templates have been offered for use [http://www.meaction.net/2016/03/10/australia-write-your-own-letter-to-a-politician/ here] and [http://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/ here].  
Some Australians are lobbying for the ICC to be adopted<ref>{{Cite news |url =https://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/ | title = Australia: Ask the medical research council to fund studies - #MEAction | date = 2016-03-14|work=#MEAction | access-date = 2018-10-02|language=en-US}}</ref>. Some suggested letter templates have been offered for use [http://www.meaction.net/2016/03/10/australia-write-your-own-letter-to-a-politician/ here] and [http://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/ here].  


===Patient groups===
===Patient groups===


The ICC is listed by all organizations, except Western Australia's ME/CFS/Lyme Association, which lists the [[Canadian Consensus Criteria|CCC]].<ref>{{Cite web|url=https://www.mycause.com.au/charity/18043/mecfsandlymeassociationofwa|title=Donate to ME/CFS and Lyme Association of WA|website=Mycause|language=en|access-date=2019-03-02}}</ref>
The ICC is listed by all organizations, except Western Australia's ME/CFS/Lyme Association, which lists the [[Canadian Consensus Criteria|CCC]].<ref>{{Cite web | url = https://www.mycause.com.au/charity/18043/mecfsandlymeassociationofwa | title = Donate to ME/CFS and Lyme Association of WA | website = Mycause|language=en | access-date = 2019-03-02}}</ref>  


One of the NSW websites lists the ICC, [[ME/CFS: A Primer For Clinical Practitioners | IACFS/ME Clinical]], the [http://www.tandfonline.com/doi/abs/10.1300/J092v13n02_01 2006 Paediatric Criteria]<ref name="JasonL2006paed" />, and the [[South Australian ME/CFS Guidelines]]<ref name="SthAustGuidelines" /> but is not clear on which one it endorses.{{Citation needed}}
One of the NSW websites lists the ICC, [[ME/CFS: A Primer For Clinical Practitioners | IACFS/ME Clinical]], the [http://www.tandfonline.com/doi/abs/10.1300/J092v13n02_01 2006 Paediatric Criteria]<ref name="JasonL2006paed" />, and the [[South Australian ME/CFS Guidelines]]<ref name="SthAustGuidelines" /> but is not clear on which one it endorses.{{Citation needed}}
Line 31: Line 28:
===Australian medical associations===
===Australian medical associations===
*The [[Royal Australasian College of Physicians]] (RACP) published guidelines in 2002, in the Australian Medical Journal.<ref name="RACP2002" />
*The [[Royal Australasian College of Physicians]] (RACP) published guidelines in 2002, in the Australian Medical Journal.<ref name="RACP2002" />
*The [[Royal Australasian College of General Practitioners]] (RACGP) published a guideline in 2015 which recommends [[graded exercise therapy]] (GET).<ref name="RACGP2015guide" /> Their magazine ''Australian Family Practitioner'' (AFP) has published articles about ME/CFS,<ref name="AFPlist" /> including a 2013 article that recommends GET and CBT.<ref name="AFP201304" />
*The [[Royal Australasian College of General Practitioners]] (RACGP) published a guideline in 2015 which recommends [[graded exercise therapy]] (GET).<ref name="RACGP2015guide" /> Their magazine ''Australian Family Practitioner'' (AFP) has published articles about ME/CFS,<ref name="AFPlist" /> including a 2013 article that recommends GET and CBT.<ref name="AFP201304" />
*The Australian Medical Association (AMA) website recommends GET.<ref name="AMA20040503" />
*The Australian Medical Association (AMA) website recommends GET.<ref name="AMA20040503" />


===National health department===
===National health department===
* [http://health.gov.au Australian Government Department of Health]<ref>{{Cite web|url=http://health.gov.au/|title=Chronic fatigue syndrome|last=|first=|authorlink=|date=|website=Health Direct|publisher=Australian Government Department of Health|archive-url=|archive-date=|url-status=|access-date=}}</ref>
* [http://health.gov.au Australian Government Department of Health]<ref>{{Cite web | url = http://health.gov.au/ | title = Chronic fatigue syndrome | last = | first = | author-link = | date = | website = Health Direct| publisher = Australian Government Department of Health| archive-url = | archive-date = |url-status = | access-date=}}</ref>
* [http://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs Direct information page on CFS from Department of Health]
* [http://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs Direct information page on CFS from Department of Health]


===National Health and Medical Research Council===
===National Health and Medical Research Council===
The [http://nhmrc.gov.au NHMRC] funds health and medical research, and develops health advice & guidelines. It is part of the [[Australian Government Department of Health]].
The [http://nhmrc.gov.au 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<ref>{{Cite news|url=https://meaustralia.net/2018/04/23/australian-governments-me-and-cfs-advisory-committee/|title=Australian government’s ME and CFS advisory committee|date=2018-04-23|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>, including Andrew Lloyd, [[Suzanne Broadbent,]] [[Sonya Marshall-Gradisnik]], and [[Kathy Rowe]].  
In 2018 the NHMRC appointed an ME and CFS advisory committee<ref>{{Cite news |url =https://meaustralia.net/2018/04/23/australian-governments-me-and-cfs-advisory-committee/ | title = Australian government’s ME and CFS advisory committee | date = 2018-04-23|work=ME Australia | access-date = 2018-10-02|language=en-US}}</ref>, 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 [[United States|US]] [[U.S. Department of Health and Human Services|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 [https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs workshops with stakeholders] before recruiting a guideline committee.  
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 [[United States|US]] [[U.S. Department of Health and Human Services|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 [https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs workshops with stakeholders] before recruiting a guideline committee.  


==== Draft report ====
==== Draft report ====
Feb 18, 2019, [https://consultations.nhmrc.gov.au/public_consultations/mecfs-2019a Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer]<ref name=":0">{{Cite web|url=https://consultations.nhmrc.gov.au/public_consultations/mecfs-2019a|title=Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer {{!}} NHMRC Public Consultations|last=|first=|authorlink=|date=Feb 18, 2019|website=consultations.nhmrc.gov.au|archive-url=|archive-date=|url-status=|access-date=2019-03-02}}</ref><blockquote>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.<ref name=":0" /></blockquote>
Feb 18, 2019, [https://consultations.nhmrc.gov.au/public_consultations/mecfs-2019a Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer]<ref name=":0">{{Cite web | url = https://consultations.nhmrc.gov.au/public_consultations/mecfs-2019a | title = Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC Chief Executive Officer {{!}} NHMRC Public Consultations | last = | first = | author-link = | date = Feb 18, 2019 | website = consultations.nhmrc.gov.au|archive-url=|archive-date=|url-status= | access-date = 2019-03-02}}</ref><blockquote>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.<ref name=":0" /></blockquote>


===State and territory health departments===
===State and territory health departments===
Line 77: Line 74:


==Patient groups==
==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)
*[[Emerge Australia]] (formerly ME/CFS Victoria, Tasmania & Northern Territory) which has 3 paid staff (population 6.5 million)
*[http://www.mecfscanberra.org.au ACT ME/Chronic Fatigue Syndrome Society] which has one paid staff member (population 0.4 million)  
*[http://www.mecfscanberra.org.au ACT ME/Chronic Fatigue Syndrome Society] which has one paid staff member (population 0.4 million)  
Line 90: Line 88:


=== Australian criteria for chronic fatigue syndrome ===
=== Australian criteria for chronic fatigue syndrome ===
*1990, [[Prevalence of chronic fatigue syndrome in an Australian population]]<ref name="Australiancriteria">{{Cite journal|last=Lloyd|first=Andrew R.|author-link=Andrew Lloyd|last2=Hickie|first2=Ian|author-link2=Ian Hickie|last3=Boughton|first3=Clement R.|author-link3=Clement Boughton|last4=Spencer|first4=Owen|author-link4=Owen Spencer|last5=Wakefield|first5=Denis|author-link5=Denis Wakefield|date=Nov 5, 1990|title=Prevalence of chronic fatigue syndrome in an Australian population|url=https://www.ncbi.nlm.nih.gov/pubmed/2233474|journal=[[The Medical Journal of Australia]]|volume=153|issue=9|pages=522–528|issn=0025-729X|pmid=2233474|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pubmed/2233474 (Abstract)]
*1990, [[Prevalence of chronic fatigue syndrome in an Australian population]]<ref name="Australiancriteria">{{Cite journal | last = Lloyd | first = Andrew R. | author-link = Andrew Lloyd | last2 = Hickie | first2 = Ian | author-link2 = Ian Hickie | last3 = Boughton | first3 = Clement R. | author-link3 = Clement Boughton | last4 = Spencer | first4 = Owen | author-link4 = Owen Spencer | last5 = Wakefield | first5 = Denis | author-link5 = Denis Wakefield | date = Nov 5, 1990 | title = Prevalence of chronic fatigue syndrome in an Australian population | url =https://www.ncbi.nlm.nih.gov/pubmed/2233474 | journal = [[The Medical Journal of Australia]] | volume = 153 | issue = 9 | pages = 522–528|issn=0025-729X|pmid=2233474|quote=|via=}}</ref> [https://www.ncbi.nlm.nih.gov/pubmed/2233474 (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.
: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===
===Notable studies===
*2016, [https://www.dovepress.com/articles.php?article_id=26236 Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome]<ref>{{Cite web|url=https://www.dovepress.com/natural-killer-cells-and-single-nucleotide-polymorphisms-of-specific-i-peer-reviewed-article-TACG|title=Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome|last=Staines|first=Donald|last2=Smith|first2=Pete|date=2016-03-31|website=The Application of Clinical Genetics|language=English|access-date=2019-03-02|last3=Johnston|first3=Samantha|last4=Chacko|first4=Anu|last5=Huth|first5=Teilah|last6=Marshall-Gradisnik|first6=Sonya}}</ref>
*2016, [https://www.dovepress.com/articles.php?article_id=26236 Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome]<ref>{{Cite web | url = https://www.dovepress.com/natural-killer-cells-and-single-nucleotide-polymorphisms-of-specific-i-peer-reviewed-article-TACG | title = Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome | last = Staines | first = Donald | last2 = Smith | first2 = Pete | date = 2016-03-31 | website = The Application of Clinical Genetics|language=English | access-date = 2019-03-02 | last3 = Johnston | first3 = Samantha | last4 = Chacko | first4 = Anu | last5 = Huth | first5 = Teilah | last6 = Marshall-Gradisnik | first6 = Sonya}}</ref>
*2016, [https://link.springer.com/chapter/10.1007/978-3-319-32240-7_11 Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy]<ref>{{Cite book|last=Ankeny|first=Rachel A.|last2=Mackenzie|first2=Fiona J.|date=2016|editor-last=Dodds|editor-first=Susan|editor2-last=Ankeny|editor2-first=Rachel A.|title=Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy|url=https://doi.org/10.1007/978-3-319-32240-7_11|series=The International Library of Ethics, Law and Technology|language=en|location=Cham|publisher=Springer International Publishing|pages=227–243|doi=10.1007/978-3-319-32240-7_11|isbn=9783319322407}}</ref>
*2016, [https://link.springer.com/chapter/10.1007/978-3-319-32240-7_11 Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy]<ref>{{Cite book | last = Ankeny | first = Rachel A. | last2 = Mackenzie | first2 = Fiona J. | date = 2016 | editor-last = Dodds|editor-first = Susan|editor2-last = Ankeny|editor2-first = Rachel A. | title = Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy | url = https://doi.org/10.1007/978-3-319-32240-7_11|series=The International Library of Ethics, Law and Technology|language=en|location=Cham| publisher = Springer International Publishing | pages = 227–243|doi=10.1007/978-3-319-32240-7_11|isbn=9783319322407}}</ref>


===Research results===
===Research results===
Line 102: Line 100:
* 2016: [http://www.meaction.net/2016/03/03/news-report-breakthrough-on-diagnostic-blood-test/ Australian Breakthrough on Diagnostic Blood Test]<ref name="#MEACTION20160303test" />
* 2016: [http://www.meaction.net/2016/03/03/news-report-breakthrough-on-diagnostic-blood-test/ Australian Breakthrough on Diagnostic Blood Test]<ref name="#MEACTION20160303test" />


*2018: [https://meaustralia.net/2018/08/06/how-much-can-people-with-me-stand/ How much can people with ME stand?]<ref>{{Cite news|url=https://meaustralia.net/2018/08/06/how-much-can-people-with-me-stand/|title=How much can people with ME stand?|date=2018-08-06|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
*2018: [https://meaustralia.net/2018/08/06/how-much-can-people-with-me-stand/ How much can people with ME stand?]<ref>{{Cite news |url =https://meaustralia.net/2018/08/06/how-much-can-people-with-me-stand/ | title = How much can people with ME stand? | date = 2018-08-06|work=ME Australia | access-date = 2018-10-02|language=en-US}}</ref>


===Research funding===
===Research funding===
Line 108: Line 106:
* 2016: [http://www.meaction.net/2016/01/20/australian-health-dept-answers-questions-on-me/ The Australian Health Department Answers Questions on ME]<ref name="#MEACTION20160120ahd" />
* 2016: [http://www.meaction.net/2016/01/20/australian-health-dept-answers-questions-on-me/ The Australian Health Department Answers Questions on ME]<ref name="#MEACTION20160120ahd" />
* 2016: [http://www.meaction.net/2016/02/12/australian-health-department-pins-its-hopes-on-nih-research/ Australian Health Dept Pins its Hopes on NIH Research]<ref name="#MEACTION20160212ahd" />
* 2016: [http://www.meaction.net/2016/02/12/australian-health-department-pins-its-hopes-on-nih-research/ Australian Health Dept Pins its Hopes on NIH Research]<ref name="#MEACTION20160212ahd" />
* 2017: [https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ Australia's Health Minister refuses to stop funding trial of 'incredibly bad' treatment]<ref>{{Cite news|url=https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/|title=Australia’s medical research council questioned on ME and CFS committee|date=2018-06-15|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
* 2017: [https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ Australia's Health Minister refuses to stop funding trial of 'incredibly bad' treatment]<ref>{{Cite news |url =https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ | title = Australia’s medical research council questioned on ME and CFS committee | date = 2018-06-15|work=ME Australia | access-date = 2018-10-02|language=en-US}}</ref>


*2018: [https://meaustralia.net/2018/08/07/friends-in-australias-parliament-for-people-with-me-and-chronic-fatigue-syndrome/ Friends in Australia's Parliament for people with ME and chronic fatigue syndrome]<ref>{{Cite news|url=https://meaustralia.net/2018/08/07/friends-in-australias-parliament-for-people-with-me-and-chronic-fatigue-syndrome/|title=Friends in Australia’s parliament for people with ME and chronic fatigue syndrome|date=2018-08-07|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
*2018: [https://meaustralia.net/2018/08/07/friends-in-australias-parliament-for-people-with-me-and-chronic-fatigue-syndrome/ Friends in Australia's Parliament for people with ME and chronic fatigue syndrome]<ref>{{Cite news |url =https://meaustralia.net/2018/08/07/friends-in-australias-parliament-for-people-with-me-and-chronic-fatigue-syndrome/ | title = Friends in Australia’s parliament for people with ME and chronic fatigue syndrome | date = 2018-08-07|work=ME Australia | access-date = 2018-10-02|language=en-US}}</ref>
*2018: [https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ Australia's medical research council questioned on ME and CFS committee]<ref>{{Cite news|url=https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/|title=Australia’s medical research council questioned on ME and CFS committee|date=2018-06-15|work=ME Australia|access-date=2018-10-02|language=en-US}}</ref>
*2018: [https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ Australia's medical research council questioned on ME and CFS committee]<ref>{{Cite news |url =https://meaustralia.net/2018/06/15/australias-medical-research-council-questioned-on-me-and-cfs-committee/ | title = Australia’s medical research council questioned on ME and CFS committee | date = 2018-06-15|work=ME Australia | access-date = 2018-10-02|language=en-US}}</ref>


===Research groups===
===Research groups===
Line 127: Line 125:
*[[Elaine DeFreitas]]
*[[Elaine DeFreitas]]
*[[Paul R Gooley|Paul Gooley]]
*[[Paul R Gooley|Paul Gooley]]
*[[Geoffrey Hallmann]]
*[[Melinda Jackson]]
*[[Melinda Jackson]]
*[[Donald Lewis]]
*[[Donald Lewis]]
Line 152: Line 151:
*[[Laura Dundovic]]
*[[Laura Dundovic]]
*[[Leigh Hatcher]]
*[[Leigh Hatcher]]
*[[Geoffrey Hallmann]]
*[[Linley Frame]]
*[[Linley Frame]]
*[[Nadine Neumann ]]
*[[Nadine Neumann ]]
Line 173: Line 173:
==References==
==References==
<references>
<references>
<ref name="ICC2011criteria">{{citation |last1   = Carruthers |first      1  |authorlink1 = Bruce Carruthers |last2   = van de Sande |first    2  |authorlink2 = Marjorie van de Sande |last3   = De Meirleir |first      3  |authorlink3 = Kenny de Meirleir |last4   = Klimas |first          4  |authorlink4 = Nancy Klimas |last5   = Broderick |first        5  |authorlink5 = Gordon Broderick |last6   = Mitchell |first        6  |authorlink6 = Terry Mitchell |last7   = Staines |first          7  |authorlink7 = Donald Staines |last8   = Powles |first          8  |authorlink8 = A C Peter Powles |last9   = Speight |first          9  |authorlink9 = Nigel Speight |last10 = Vallings |first        10 |authorlink10= Rosamund Vallings |last11 = Bateman |first          11 |authorlink11= Lucinda Bateman
<ref name="ICC2011criteria">{{citation | last1 = Carruthers | first1 = B M | author-link1 = Bruce Carruthers | last2 = van de Sande | first2 = M I | author-link2 = Marjorie van de Sande | last3 = De Meirleir | first3 = Kenny L | author-link3 = Kenny de Meirleir | last4 = Klimas | first4 = Nancy G | author-link4 = Nancy Klimas | last5 = Broderick | first5 = G | author-link5 = Gordon Broderick | last6 = Mitchell | first6 = T | author-link6 = Terry Mitchell | last7 = Staines | first7 = Donald | author-link8 = Donald Staines | last8 = Powles | first8 = ACP | author-link8 = A C Peter Powles | last9 = Speight | first9 = Nigel | author-link9 = Nigel Speight | last10= Vallings | first10 = Rosamund | author-link10 = Rosamund Vallings | last11= Bateman | first11 = Lucinda | author-link11 = Lucinda Bateman | last12= Baumgarten-Austrheim | first12 = B | author-link12 = Barbara Baumgarten-Austrheim | last13= Bell | first13 = David S | author-link13 = David Bell | last14= Carlo-Stella | first14 = N | author-link14 = Nicoletta Carlo-Stella | last15= Chia | first15 = John | author-link15 = John Chia | last16= Darragh | first16 = A | author-link16 = Austin Darragh | last17= Jo | first17 = D | author-link17 = Daehyun Jo | last18= Lewis | first18 = Donald P | author-link18 = Donald Lewis | last19= Light | first19 = Alan R | author-link19 = Alan Light | last20= Marshall-Gradisnik | first20 = Sonya | author-link20 = Sonya Marshall-Gradisnik | last21= Mena | first21 = I | author-link21 = Ismael Mena | last22= Mikovits | first22 = J A | author-link22 = Judy Mikovits | last23= Miwa | first23 = K | author-link23 = Kunihisa Miwa | last24 = Murovska | first24 = M | author-link24 = Modra Murovska | last25 = Pall | first25 = M L | author-link25 = Martin Pall | last26= Stevens | first26 = Staci R | author-link26 = Staci Stevens | title = Myalgic encephalomyelitis: International Consensus Criteria | journal = Journal of Internal Medicine | volume = 270 | issue = 4 | pages = 327–338 | date = Aug 22, 2011 | pmid = 21777306 | doi = 10.1111/j.1365-2796.2011.02428.x | url = http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full }}</ref>
| last12 = Baumgarten-Austrheim | first12= B             | authorlink12= Barbara Baumgarten-Austrheim |last13 = Bell |first            13 |authorlink13= David Bell |last14 = Carlo-Stella |first    14 |authorlink14= Nicoletta Carlo-Stella |last15 = Chia |first            15 |authorlink15= John Chia |last16 = Darragh |first          16 |authorlink16= Austin Darragh |last17 = Jo |first              17 |authorlink17= Daehyun Jo |last18 = Lewis |first            18 |authorlink18= Donald Lewis |last19 = Light |first            19 |authorlink19= Alan Light |last20 = Marshall-Gradisnik |first    20 |authorlink20= Sonya Marshall-Gradisnik |last21 = Mena |first            21 |authorlink21= Ismael Mena |last22 = Mikovits |first        22 |authorlink22= Judy Mikovits |last23 = Miwa |first            23 |authorlink23= Kunihisa Miwa |last24 = Murovska |first        24 |authorlink24= Modra Murovska |last25 = Pall |first            25 |authorlink25= Martin Pall |last26 = Stevens |first          26 |authorlink26= Staci Stevens
<ref name="JasonL2006paed">{{citation | last1 = Jason | first1 = Leonard A | author-link1 = Leonard Jason | last2 = Jordan | first2 = Karen | author-link2 = Karen Jordan | last3 = Miike | first3 = Teruhisa | author-link3 = Teruhisa Miike | last4 = Bell | first4 = David S | author-link4 = David Bell | last5 = Lapp | first5 = Charles | author-link5 = Charles Lapp | last6 = Torres-Harding | first6 = Susan | author-link6 = Susan Torres-Harding | last7 = Rowe | first7 = Kathy | author-link8 = Katherine Rowe | last8 = Gurwitt | first8 = Alan | author-link8 = Alan Gurwitt | last9 = De Meirleir | first9 = Kenny | author-link9 = Kenny de Meirleir | last10= Van Hoof | first10 = Elke LS | author-link10 = Elke Van Hoof | title = A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome | journal = Journal of Chronic Fatigue Syndrome | volume = 13 | issue = 2-3 | pages = 1-44 | date = 2006 | doi = 10.1300/J092v13n02_01 | url = http://www.tandfonline.com/doi/abs/10.1300/J092v13n02_01 }}</ref>
| title   = Myalgic encephalomyelitis: International Consensus Criteria
<ref name="#MEACTION20150819arma">{{citation | last1 = #MEAction | author-link1 = #MEAction | last2 = Nimmo | first2 = Sasha | author-link2 = Sasha Nimmo | title = Australian Research into ME/CFS in Adolescents | website = #MEAction | date = Aug 19, 2015 | url = http://www.meaction.net/2015/08/19/australian-research-into-mecfs-in-adolescents/ }}</ref>
| journal = Journal of Internal Medicine | volume = 270 | issue = 4 | page = 327–338
<ref name="#MEACTION20151116asqg">{{citation | last1 = #MEAction | author-link1 = #MEAction | last2 = Nimmo | first2 = Sasha | author-link2 = Sasha Nimmo | title = Australian Senator Questions Government on Lack of Action on ME | website = #MEAction | date = Nov 16, 2015 | url = http://www.meaction.net/2015/11/16/aust-senator-questions-government-on-lack-of-action-on-me/ }}</ref>
| date   = 22 August 2011
<ref name="#MEACTION20160120ahd">{{citation | last1 = #MEAction | author-link1 = #MEAction | last2 = Nimmo | first2 = Sasha | author-link2 = Sasha Nimmo | title = Australian Health Dept Answers Questions on ME | website = #MEAction | date = Jan 20, 2016 | url = http://www.meaction.net/2016/01/20/australian-health-dept-answers-questions-on-me/ }}</ref>
| pmid   = 21777306         | doi = 10.1111/j.1365-2796.2011.02428.x
<ref name="#MEACTION20160212ahd">{{citation | last1 = #MEAction | author-link1 = #MEAction | last2 = Nimmo | first2 = Sasha | author-link2 = Sasha Nimmo | title = Australian Health Dept Pins its Hopes on NIH Research | website = #MEAction | date = Feb 12, 2016 | url = http://www.meaction.net/2016/02/12/australian-health-department-pins-its-hopes-on-nih-research/ }}</ref>
| url     = http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
<ref name="#MEACTION20160303test">{{citation | last1 = #MEAction | author-link1 = #MEAction | last2 = Nimmo | first2 = Sasha | author-link2 = Sasha Nimmo | title = Australian Breakthrough on Diagnostic Blood Test | website = #MEAction | date = Mar 3, 2016 | url = http://www.meaction.net/2016/03/03/news-report-breakthrough-on-diagnostic-blood-test/ }}</ref>
}}</ref>
<ref name="#MEACTION20160314amrc">{{citation | last1 = #MEAction | author-link1 = #MEAction | last2 = Nimmo | first2 = Sasha | author-link2 = Sasha Nimmo | title = Australians: Ask the Medical Research Council to Fund Studies | website = #MEAction | date = Mar 14, 2016 | url = http://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/ }}</ref>
<ref name="JasonL2006paed">{{citation |last1   = Jason |first            1  |authorlink1 = Leonard Jason |last2   = Jordan |first          2  |authorlink2 = Karen Jordan |last3   = Miike |first            3  |authorlink3 = Teruhisa Miike |last4   = Bell |first            4  |authorlink4 = David Bell |last5   = Lapp |first            5  |authorlink5 = Charles Lapp
<ref name="SthAustGuidelines">{{citation | last1 = South Australian Department of Human Services | last2 = University of Adelaide | last3 = ME/CFS Society of South Australia | title = ME/CFS Guidelines: Management Guidelines for General Practitioners | date = 2004| isbn = 0 7308 9334 0 | url = http://sacfs.asn.au/download/guidelines.pdf }}</ref>
| last6   = Torres-Harding   | first6 = Susan             | authorlink6 = Susan Torres-Harding |last7   = Rowe |first            7  |authorlink7 = Katherine Rowe |last8   = Gurwitt |first          8  |authorlink8 = Alan Gurwitt |last9   = De Meirleir |first      9  |authorlink9 = Kenny de Meirleir |last10 = Van Hoof |first        10 |authorlink10= Elke Van Hoof
<ref name="AHMFwebsite">{{citation | website = Alison Hunter Memorial Foundation | title = Alison Hunter Memorial Foundation | url = http://www.ahmf.org }}</ref>
| title   = A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
<ref name="RACP2002">{{citation | author1 = Victoria Toulkidis | author2 = Produced by a Working Group convened under the auspices of the Royal Australasian College of Physicians
| journal = Journal of Chronic Fatigue Syndrome | volume = 13 | issue = 2-3 | page = 1-44
| display-authors = 1 | title = Supplement: Chronic fatigue syndrome | journal = Med J Aust 2002 | volume = 176 | issue = 9 | pages = 17-55 | date = 2002 | url = https://www.mja.com.au/journal/2002/176/9/chronic-fatigue-syndrome }}</ref>
| date   = 2006
<ref name="RACGP2015guide">{{citation | author= Royal Australasian College of General Practitioners (RACGP) | title = Graded exercise therapy: chronic fatigue syndrome | date = Mar 2015 | url = http://www.racgp.org.au/your-practice/guidelines/handi/interventions/other/graded-exercise-therapy-for-chronic-fatigue-syndrome/ }}</ref>
| doi     = 10.1300/J092v13n02_01
<ref name="AFPlist">{{citation | journal = Australian Family Physician | title = articles about Chronic Fatigue Syndrome | url = http://www.racgp.org.au/search/ }}</ref>
| url     = http://www.tandfonline.com/doi/abs/10.1300/J092v13n02_01
<ref name="AFP201304">{{citation | author= Megan Arroll, Bruce Arroll | title = Chronic fatigue syndrome: A patient centred approach to management | journal = Australian Family Practitioner | date = Apr 2013 | url = http://www.racgp.org.au/afp/2013/april/chronic-fatigue-syndrome/ }}</ref>
}}</ref>
<ref name="AMA20040503">{{citation | author= Australian Medical Association | title = Chronic fatigue sufferers beat blues with exercise | date = May 3, 2004 | url = https://ama.com.au/media/chronic-fatigue-sufferers-beat-blues-exercise }}</ref>
<ref name="#MEACTION20150819arma">{{citation
| last1   = #MEAction                     | authorlink1 = #MEAction |last2   = Nimmo |first            2  |authorlink2 = Sasha Nimmo
| title   = Australian Research into ME/CFS in Adolescents
| journal = #MEAction
| date   = 19 Aug 2015
| url     = http://www.meaction.net/2015/08/19/australian-research-into-mecfs-in-adolescents/
}}</ref>
<ref name="#MEACTION20151116asqg">{{citation
| last1   = #MEAction                     | authorlink1 = #MEAction |last2   = Nimmo |first            2  |authorlink2 = Sasha Nimmo
| title   = Australian Senator Questions Government on Lack of Action on ME
| journal = #MEAction
| date   = 16 Nov 2015
| url     = http://www.meaction.net/2015/11/16/aust-senator-questions-government-on-lack-of-action-on-me/
}}</ref>
<ref name="#MEACTION20160120ahd">{{citation
| last1   = #MEAction                     | authorlink1 = #MEAction |last2   = Nimmo |first            2  |authorlink2 = Sasha Nimmo
| title   = Australian Health Dept Answers Questions on ME
| journal = #MEAction
| date   = 20 Jan 2016
| url     = http://www.meaction.net/2016/01/20/australian-health-dept-answers-questions-on-me/
}}</ref>
<ref name="#MEACTION20160212ahd">{{citation
| last1   = #MEAction                     | authorlink1 = #MEAction |last2   = Nimmo |first            2  |authorlink2 = Sasha Nimmo
| title   = Australian Health Dept Pins its Hopes on NIH Research
| journal = #MEAction
| date   = 12 Feb 2016
| url     = http://www.meaction.net/2016/02/12/australian-health-department-pins-its-hopes-on-nih-research/
}}</ref>
<ref name="#MEACTION20160303test">{{citation
| last1   = #MEAction                     | authorlink1 = #MEAction |last2   = Nimmo |first            2  |authorlink2 = Sasha Nimmo
| title   = Australian Breakthrough on Diagnostic Blood Test
| journal = #MEAction
| date   = 3 Mar 2016
| url     = http://www.meaction.net/2016/03/03/news-report-breakthrough-on-diagnostic-blood-test/
}}</ref>
<ref name="#MEACTION20160314amrc">{{citation
| last1   = #MEAction                     | authorlink1 = #MEAction |last2   = Nimmo |first            2  |authorlink2 = Sasha Nimmo
| title   = Australians: Ask the Medical Research Council to Fund Studies
| journal = #MEAction
| date   = 14 Mar 2016
| url     = http://www.meaction.net/2016/03/14/aust-ask-the-medical-research-council-to-fund-studies/
}}</ref>
<ref name="SthAustGuidelines">{{citation
| last1   = South Australian Department of Human Services
| last2   = University of Adelaide
| last3   = ME/CFS Society of South Australia
| title   = ME/CFS Guidelines: Management Guidelines for General Practitioners
| date   = 2004
| ISBN    = 0 7308 9334 0
| url     = http://sacfs.asn.au/download/guidelines.pdf
}}</ref>
<ref name="AHMFwebsite">{{citation
| title  = Alison Hunter Memorial Foundation (website)
| url     = http://www.ahmf.org
}}</ref>
<ref name="RACP2002">{{citation
| author1   = Victoria Toulkidis  
| author2   = Produced by a Working Group convened under the auspices of the Royal Australasian College of Physicians
| display-authors = 1
| title   = Supplement: Chronic fatigue syndrome
| journal = Med J Aust 2002 | volume = 176 | issue = 9 | page = 17-55
| date   = 2002
| url     = https://www.mja.com.au/journal/2002/176/9/chronic-fatigue-syndrome
}}</ref>
<ref name="RACGP2015guide">{{citation
| author = Royal Australasian College of General Practitioners (RACGP)
| title   = Graded exercise therapy: chronic fatigue syndrome
| date   = Mar 2015
| url     = http://www.racgp.org.au/your-practice/guidelines/handi/interventions/other/graded-exercise-therapy-for-chronic-fatigue-syndrome/
}}</ref>
<ref name="AFPlist">{{citation
| journal = Australian Family Physician
| title   = articles about Chronic Fatigue Syndrome
| url     = http://www.racgp.org.au/search/
}}</ref>
<ref name="AFP201304">{{citation
| author = Megan Arroll, Bruce Arroll
| title   = Chronic fatigue syndrome: A patient centred approach to management
| journal = Australian Family Practitioner
| date   = Apr 2013
| url     = http://www.racgp.org.au/afp/2013/april/chronic-fatigue-syndrome/  
}}</ref>
<ref name="AMA20040503">{{citation
| author = Australian Medical Association
| title   = Chronic fatigue sufferers beat blues with exercise
| date   = 3 May 2004
| url     = https://ama.com.au/media/chronic-fatigue-sufferers-beat-blues-exercise
}}</ref>
</references>
</references>



Latest revision as of 16:10, April 3, 2023

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%,[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". nhmrc.gov.au. Retrieved March 2, 2019.
  3. "ME/CFS Australia (SA) Inc: Letter to eMJA (March 7, 2002)". sacfs.asn.au. Retrieved December 5, 2018.
  4. "Alison Hunter Memorial Foundation: Supporting Biomedical Research Into Myalgic Encephalomyelitis/ Chronic Fatigue Sydnrome ME/CFS - Guidelines". ahmf.org. 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". consultations.nhmrc.gov.au. 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