About Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)
ME/CFS is a complex and debilitating condition, characterised by profound fatigue following exertion (not relieved by sleep or rest), unrefreshing sleep and cognitive impairment. Secondary symptoms may include gastrointestinal disorders, muscle and joint pain and immune impairments. Post exertional malaise (PEM) is suggested as a cardinal feature of ME/CFS.1,2 The aetiology of ME/CFS is not established, although many hypotheses exist.3 Diagnosis is also a challenge in the absence of a diagnostic test and lack of a universally accepted case definition among researchers and clinicians.4 Diagnosis currently relies on elimination of other similar disease patterns and self-reported symptom based criteria. Symptoms are varied and diverse patient experiences make ME/CFS diagnosis and treatment challenging.5
Australian advice for ME/CFS
NHMRC has never issued or approved guidelines for ME/CFS and there are no current Australian clinical practice guidelines for ME/CFS. In August 2024, the Department of Health and Ageing allocated $1.1 million to NHMRC to develop clinical practice guidelines for ME/CFS. The goal of these guidelines is to improve diagnosis, treatment and care of patients living with ME/CFS.
This was announced by Minister Butler in June 2024.
Further information
Contact
For further information contact NHMRC at ME_CFS@nhmrc.gov.au
References
1 Institute of Medicine (IOM), 2015. 'Beyond Myalgic Encephalomyelitis/ Chronic fatigue Syndrome: Redefining an illness', Washington, DC. The National Academies Press.
2 Carruthers, BM, Van de Sande, MI, De Meirleir, KL et al, 2011. 'Myalgic encephalomyelitis: International consensus criteria', Journal of Internal Medicine, vol. 270, is. 4, pp. 327-338.
3 Monro, JA & Puri, BK, 2018. 'A Molecular Neurobiological Approach to understanding the aetiology of chronic fatigue syndrome (Myalgic Encephalomyelitis or Systemic exertion intolerance disease) with treatment implications', Molecular Neurobiology.
4 Johnston, S, Staines, D, Marshall-Gradisnik, S, 2016. 'Epidemiological characteristics of chronic fatigue syndrome/ Myalgic encephalomyelitis in Australian patients', Clinical Epidemiology, vol. 8 pp. 97-107.
5 Baraniuk, JN, 2017. 'Chronic Fatigue Syndrome: BMJ Best Practice guideline', British Medical Journal, accessed May 2018.
