Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Myalgic Encephalomyelitis (ME),  commonly referred to as Chronic fatigue syndrome (CFS) is a complex and highly debilitating condition characterised by profound fatigue following exertion (that is not relieved by sleep or rest), unrefreshing sleep and cognitive impairment. Secondary symptoms may also 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 has not been found 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 given by patients. Symptoms are often varied between patients and these diverse experiences make ME/CFS diagnosis and treatment challenging.

ME/CFS Advisory Committee

NHMRC has established an ME/CFS Advisory Committee (the Committee) under section 39 of the National Health and Medical Research Council Act 1992.  The Committee will consider and advise the NHMRC Chief Executive Officer  on current needs for research on ME/CFS and clinical guidance on its diagnosis and treatment.

Terms of Reference

The Committee will advise the Chief Executive Officer of NHMRC on:

  1. the status of national and international research into ME/CFS
  2. gaps in research on ME/CFS. This will include but not be limited to research on the immunology, psychology, microbiology and virology of the conditions, as well as any health services research
  3. the status of clinical guidance on ME/CFS available to doctors and health professionals
  4. requirements and opportunities for improved clinical guidance
  5. any other issue on ME/CFS that the NHMRC Chief Executive Officer may request.

Membership

The  Committee includes a range of expertise, including physicians, researchers and consumer representatives.

Professor Kwun Fong (Chair)

Director of UQ Thoracic Research Centre; Thoracic and Sleep Physician; Professor, School of Medicine, University of Queensland and Deputy Co-Chair of Medical Services Advisory Services (MSAC)

Relevant experience:

Professional knowledge and experience. Experience with high level government committees. 
Dr Gary Deed

Medical Practitioner and Chair of Diabetes Specific Interest Network RACGP

Relevant experience:

Professional knowledge and experience
Professor Rachel Ankeny

Professor in Ethics at the University of Adelaide. Co-authored chapter “Three approaches to Chronic Fatigue Syndrome in UK, Australia and Canada: Lessons for Democratic Policy”

Relevant experience:

Professional knowledge and experience 
Associate Professor Suzanne Broadbent

Exercise Scientist and Accredited Exercise Physiologist; Program Lead-Clinical Exercise Science, University of the Sunshine Coast

Relevant experience:

Professional knowledge and experience in ME/CFS research
Professor Andrew Lloyd AM

Director, Viral Immunology Systems Program in the Kirby Institute; Infectious Disease Physician

Relevant experience:

Professional knowledge and experience in ME/CFS research
Professor Sonya Marshall-Gradisnik

Director, National Centre for Neuroimmunology and Emerging Diseases, Griffith University. Research focused towards identifying biomarkers of ME/CFS.

Relevant experience:

Professional knowledge and experience in ME/CFS research
Dr Kathy Rowe

Senior Consultant Physician, Royal Children’s Hospital, Melbourne. Has research interest in CFS in children and adolescents.

Relevant experience:
Professional knowledge and experience in ME/CFS research

Ms Simone Eyssens

 

 

Ms Sally Missing

Simone’s support person and/ or proxy

Founding member of #MEAction Network Australia and Emerge Australia member

Relevant experience:
Consumer representative

 

President, Emerge Australia

Relevant experience:
Consumer representative

Ms Penelope McMillan

President, ME/CFS Australia (SA)

Relevant experience:
Consumer representative

Note:
NHMRC has well defined procedures for the formation of advisory committees which are based on obtaining the best experts available while ensuring conflicts of interest (real and perceived) are managed appropriately.

Disclosure of Interests of Members

Disclosure of Interests of Members PDF

NHMRC asked each Committee member to document their interests, as part of the process of the establishment of any NHMRC committee. Members were asked to consider perceived interests as well as real interests.

Members were specifically asked to identify, to the best of their ability, work associated with ME/CFS research and clinical guidance including:

  • relevant financial interests;
  • relevant professional or organisational experience; and
  • other relationships or activities.

Throughout the project, members are required to inform NHMRC of any changes to their interests, and management strategies are put in place as needed.

Progress Update

ME/CFS Advisory Committee Meetings

Meeting One: 7 December 2017

Discussion focussed on: 

  • Identifying research gaps in ME/CFS by mapping existing literature, including systematic reviews and meta-analyses 
  • Discussion of diagnostic criteria and effective research translation for ME/CFS patients,  clinicians and health care workers 
  • Considerations and discussion surrounding diagnostic criteria in research to clarify patient cohort selection 
  • Highlighting gaps in international research informed by reports such as: Institute of Medicine (IOM) report (2015), US National Institute of Health (NIH) request for information (2016) and NIH Pathways to prevention workshop (2014) 
  • Potential collaboration opportunities with United States, Canada and the United Kingdom on guideline development and research activities 
  • Importance of adolescent and paediatric ME/CFS support in clinical and educational environments 

The Advisory Committee members discussed the need to map existing literature, including  systematic reviews and meta-analyses  to identify gaps in ME/CFS research. Members also began discussing  potential collaboration opportunities with Canada, the United Kingdom, and the United States on ME/CFS research and guidelines.

Ms Sally Missing has been added to the membership of the Committee as a support person and/or proxy to Ms Simone Eyssens in the event that she is unable to attend meetings.

Meeting Two: 19 March 2018

Discussion focussed on: 

  • Continued conversation of the mapped literature, international research and clinical guidance activities, with the aim of progressing advice to the NHMRC Chief Executive Officer
  • Advising that ME/CFS research funding should be based on three key principles: Collaboration, Consistency and Capacity
  • The options for international collaboration and biobanks
  • The UK's National Institute for Clinical Excellence (NICE) project to update its clinical practice guidelines, as well as NHMRC's standard processes to develop and revise clinical practice guidelines
  • Agreeing to further deliberations out of session in preparation for the third meeting in May 2018.

Meeting three: 29 May 2018

Discussion focussed on: 

  • Articulating an accepted description or definition for ME/CFS for NHMRC to facilitate research and clinical guideline development 
  • Agreeing on key diagnostic criteria, given the current lack of a specific and sensitive diagnostic test which has in turn hampered research on pathogenesis, treatment, and conceptualisation of ME/CFS as a distinct condition. Members have advised that NHMRC should not develop any new criteria or definitions, but rather agree on what is currently being used internationally, and clarifying this for use in Australia
  • Opportunities for clinical guideline development and the role that guidelines take in promoting clinician awareness of the condition as well as influencing patient outcomes.
  • Agreeing on some options to promote current good quality clinical advice on NHMRC’s website, as an interim until NHMRC can fully consider formal guideline adaptation or development.

Meeting Four: 21 June 2018

Discussion focussed on: 

  • Agreeing on an already existing definition that reflects the current understanding of ME/CFS for clinicians and researchers but noting the different context of clinical diagnosis and research based definitions   
  • Clarifying diagnostic criteria commonly used in research internationally and within Australia to help guide future research consistency and capacity for collaboration. Members have advised NHMRC that there is currently no perfect diagnostic criteria, but agreed that the Canadian consensus criteria are internationally one of the most commonly used criteria for research
  • Opportunities for building research capacity for ME/CFS research translation and health services research
  • Resources for clinicians and patients to be placed on the NHMRC webpage.      

Public Consultation 

The Committee is in the process of synthesising the views of members prior to drafting a report to NHMRC’s Chief Executive Officer (CEO) on the research and clinical guidance needs of ME/CFS in Australia. The draft report to CEO will be released for public consultation later this year to provide an opportunity for the general public as well as the ME/CFS sector to contribute to the proposed recommendations in the report and ensure that the views of researchers and those with ME/CFS and their clinicians/carers have been captured and considered. 
Proposals and submissions sent to NHMRC prior to the release of the draft report to CEO will not be considered until the public consultation stage. 

Information on the public consultation timeframes will be provided here shortly. 

Information for Clinicians

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) 
(A note for clinicians: this article contains a Clinical Diagnostic Worksheet for use at initial and subsequent consultations) 

Canadian Medical Association – Toward optimised practice –Identification and symptom management of ME/CFS - Clinical Practice Guidelines (2016) 
(A note for clinicians: this article contains a ME/CFS Symptom Checklist) 

Institute of Medicine – Beyond ME/CFS Redefining an Illness: Report guide for Clinicians (2015)
(A note for clinicians: Questionnaires and tools for assessing symptoms of ME/CFS are provided on pages 13-14.)   

International Association for CFS/ME (IACFSME) Chronic Fatigue Syndrome /Myalgic Encephalomyelitis – Primer for Clinical practitioners (2014 ed)

A patient centred approach - Royal Australian College of General Practitioners (2013) 

ME/CFS fact sheet – Better Health Channel a resource for GPs 

Treating Chronic Fatigue Syndrome - Royal Australian College of General Practitioners (2011)

ME/CFS guidelines: Management Guidelines for General practitioners – Government of South Australia (2004) (A note for clinicians: this article contains a ME/CFS Symptom Checklist)

Royal Australasian College of Physicians (RACP) Chronic Fatigue Syndrome Clinical practice guidelines (2002)

Disclaimer: The findings and conclusions in these documents are those of the authors and do not represent the official position of the National Health and Medical Research Council.  The resources are listed by year of publication and as such do not imply any NHMRC preference or priority. 

Information for ME/CFS Patients and Carers

Bridges and Pathways - http://bridgesandpathways.org.au/index.php/mecfs/ 

Emerge Australia - https://emerge.org.au/ 

ME/CFS Australia (SA) http://www.sacfs.asn.au/

ME/CFS Australia  https://mecfs.org.au/about-us/related-organisations/

U.S Center for Disease control (CDC) ME/CFS https://www.cdc.gov/me-cfs/

Disclaimer: The findings and conclusions in these documents are those of the authors and do not represent the official position of the National Health and Medical Research Council.  The resources are listed alphabetically and as such do not imply any NHMRC preference or priority. 

Contact

For further information please 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. Available from: https://www.ncbi.nlm.nih.gov/books/NBK274235/
  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. https://doi.org/10.1007/s12035-018-0928-9
  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. https://bestpractice.bmj.com/topics/en-gb/277