NHMRC established the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Advisory Committee under section 39 of the National Health and Medical Research Council Act 1992 to advise the NHMRC Chief Executive Officer on the current needs for research and clinical guidance on ME/CFS. The Committee finalised its report in late April 2019.
Overview
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
ME/CFS Advisory Committee Report to NHMRC Chief Executive Officer
The ME/CFS Advisory Committee Report was finalised in April 2019. This report advises the NHMRC Chief Executive Officer (CEO) on the current needs for research and clinical guidance for ME/CFS in Australia. A draft of the ME/CFS Report was released for public consultation for a period of 60 days, between 21 December 2018 and 18 February 2019. A summary of the number of responses received for public consultation is provided in the table below.
- CEO Response – Open Letter to stakeholders (available from Downloads below)
- ME/CFS Advisory Committee Report to NHMRC CEO
- Public consultation submissions
Summary of public consultation submissions received
| Submissions - information | No. |
|---|---|
| Total number of submissions received* | 292 |
| Total number of submissions considered | 262 |
| Total number of published submissions** | 140 |
*30 submissions were not considered due to being incomplete, duplicate or portal test
**122 submissions were not published due to:
- submitters not giving consent for publication (113)
- submissions provided is an incompatible/ unpublishable format (9).
ME/CFS funding announcements
On 27 March 2019, the Australian Government announced the allocation of $3 million for an NHMRC Targeted Call for Research (TCR) to better understand the causes and improve the diagnosis of ME/CFS. The call opened on 23 October 2019 and closes 29 January 2020. Find outcomes and progress reports of the research projects funded through this TCR at:
The Australian Government also funded a grant through the Medical Research Future Fund (Targeted Health System and Community Organisation Research Program) to conduct a health economics study of the impacts and costs associated with ME/CFS. Outcomes of this grant were announced on 20 September 2019. More information about the announcement is available at $6.6 million to find answers to important health questions.
Resources
Disclaimer
Information for clinicians published within the past five years is listed below for reference. The resources are listed by year of publication and as such do not imply any NHMRC preference or priority. The findings and conclusions in these documents are those of the authors and do not represent the official position of NHMRC, nor are they approved by NHMRC.
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 (2017)
- Frontiers in Paediatrics – ME/CFS Diagnosis and Management in Young People: A Primer (2017)
Information for ME/CFS patients and carers
- Bridges and Pathways
- Emerge Australia
- ME/CFS South Australia Inc
- ME/CFS Australia
- US Center for Disease control (CDC) ME/CFS
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.
