NHMRC recommended guidelines

Information for clinicians

• National Institute for Health and Care Excellence (UK) – Guidelines for myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management 2021
• Frontiers in Paediatrics – Initiating Care of a Patient With Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) (2019)
• British Medical Journal – Best Practice guideline – Beyond ME/CFS: redefining an Illness (2024)
• Frontiers in Paediatrics – ME/CFS Diagnosis and Management in Young People: A Primer (2017)

Diagnosis based on any of these sources can be coded using SNOMED SCTID 52702003.

The NHMRC has additionally recommended that researchers consider the NIH's Common Data Elements (CDEs).

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In addition to the guidelines above that are recommended by the NHMRC for current use in Australia, the following guidelines are or have been in use elsewhere in the world.

Other current guidelines

2024 - BMJ, Best Practice, UK, Myalgic encephalomyelitis (Chronic fatigue syndrome) by J N Baraniuk, S Marshall-Gradisnik, N Eaton-Fitch.

2021 - National Institute for Health and Care Excellence (NICE) guidelines, UK.

2020 - US ME/CFS Clinician Coalition: Resources for Medical Providers Caring for People with ME/CFS. They have authored a handout on the basics of diagnosis and management of ME /CFS.

2014 - IACFS/ME's Canadian Consensus Criteria (CCC)

2012 - the Primer based on the International Consensus Criteria (ICC)

Outdated Australian guidelines

2004 - Management Guidelines for General Practitioners – Government of South Australia. Based on the CCC. Contains an ME/CFS symptom checklist.

2002 - RACP Guidelines were widely criticised by ME/CFS Australia and the ME/CFS community as being inadequate and harmful. In response, South Australian clinicians, researchers, academics and government agencies worked with patients to develop the 2004 SA Guidelines.

Other diagnostic guidelines

2015 - Institute of medicine (IOM), US – Beyond ME/CFS Redefining an Illness. The global ME/CFS community has not generally accepted the IOM's Systemic Exertion Intolerance Disease (SEID) criteria, and therefore neither has Australia's NHMRC.

The diagnostic criteria described below have all been retired as they do not require the distinguishing feature of ME/CFS: post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE).

1994 - Fukuda Criteria of the Centers for Disease Control and Prevention (CDC).
Historically, the Fukuda criteria have been used extensively in research, although they do not require PEM, which is now considered essential to the diagnosis. Contemporary research may therefore use both the Fukuda criteria and criteria that do require PEM to facilitate a comparison of new research with earlier studies.

1994 - London Criteria, updated 2014
The London Criteria, based on the work of Melvin Ramsay, were updated in 2009 and 2014, in addition to being modified for use by some researchers. Lack of agreement on the London Criteria resulted in limited uptake.

1991 - Oxford Criteria for research
The Oxford Criteria have been criticised as being overly inclusive, resulting in false positive diagnoses. For example, only 1 in 15 Oxford Criteria research participants met criteria for the CCC.

1988 - CDC's Holmes Criteria
The Holmes Criteria were extrapolated from chronic Epstein-Barr virus syndrome and focus on the symptom of chronic fatigue.

1986 - Ramsay's Definition: The Clinical Features of Myalgic Encephalomyelitis.
Melvin Ramsay is widely considered the 'father' of ME, dating back to 1955, and there are patients today who identify as having Ramsay's ME.