Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS) is a highly debilitating disorder characterised by multiple symptoms including profound fatigue, muscle and joint pain, gut disorder and cognitive impairment[i]. These symptoms are often triggered or worsened following physical or mental exertion.

The aetiology or underlying mechanism of the illness has not been defined, and its diagnosis remains a challenge in the absence of a biological or clinical test. Diagnosis currently relies on differentiating between other diseases and disorders, as well as self-reported symptom-based criteria. Increasing community interest in Australia focuses on improving our understanding and treatment of  ME/CFS.

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

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

The Advisory Committee is considering the following information as part of its deliberations:

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

Members:

  • continued discussion of the mapped literature and international research and clinical guidance activies, with the aim of progressing advice to the NHMRC Chief Executive Officer
  • advised that ME/CFS research funding should be based on three key principles: Collaboration, Consistency and Capacity
  • discussed the options for international collaboration and biobanks
  • discussed 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
  • agreed to further deliberations out of session in preparation for the third meeting in May 2018.

Meeting three: 29 May 2018

The May meeting 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.

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. 

Contact

For further information please contact NHMRC at ME_CFS@nhmrc.gov.au

References

  1. The Institute of Medicine of the National Academies, Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Redefining an Illness, February 2015, available from https://www.ncbi.nlm.nih.gov/books/NBK274235/