Australian government’s ME and CFS advisory committee

By Sasha Nimmo

Australia’s National Health and Medical Research Council (NHMRC) appointed  group of medical professionals and people representing people with Myalgic Encephalomyelitis and chronic fatigue syndrome to a ME and CFS advisory committee. The committee, who have begun meeting, will advise the government on current research, gaps in research and whether the 2002 clinical guidelines for doctors should be revised.

The NHMRC did not put out a call for applications for positions on the advisory committee, unlike the USA’s Department of Health and Human services does for it’s Chronic Fatigue Syndrome Advisory Committee. Nor did it follow the UK example and hold workshops with stakeholders before recruiting a guideline committee.

The Australian ME and CFS advisory committee comprises seven medical professionals/researchers and two consumer representatives:

1. Professor Kwun Fong (Chair) specialises in lung disease at the University of Queensland’s Faculty of Medicine and is a thoracic and sleep physician at The Prince Charles Hospital.
2. Dr Gary Deed specialises in diabetes. Dr Deed’s profile states his ‘particular areas of focus include Women’s Health, Chronic Fatigue. Fibromyalgia, Diabetes and Austistic Spectrum Disorder’.
3. Professor Rachel Ankeny is a Professor of Ethics. Prof Ankeny’s stated areas of expertise are history/philosophy of science, bioethics and science policy, and food studies.
4. Associate Professor Suzanne Broadbent is a clinical exercise physiologist at the University of the Sunshine Coast. The University’s website lists her top area of expertise as ‘Chronic Fatigue Syndrome/ME exercise management, intermittent and graded exercise’.  Associate Prof Broadbent recently did a five week aquaerobics trial on patients with chronic fatigue syndrome (no set criteria) and found all participants improved. Prof Broadbent was applying for funding to run a bigger project.
5. Professor Andrew Lloyd is an infectious diseases physician, and an epidemiology, virology and immunology researcher. Prof Lloyd developed the UNSW Fatigue Clinic which treats chronic fatigue syndrome with graded exercise therapy (GET) and cognitive behavioural therapy (CBT).  Prof Lloyd published studies on chronic fatigue syndrome (including the ‘Dubbo studies‘) and is one of the authors of the widely-criticised 2002 Australian CFS Guidelines. More recently, he undertook a study to roll out CBT and GET training to medical professionals to treat chronic fatigue syndrome.
6. Professor Sonya Marshall-Gradisnik is an immunology researcher, specialising in ME and CFS. Prof Marshall-Gradisnik is well-known as Director, National Centre for Neuroimmunology and Emerging Diseases, Griffith University. NCNED is endorsed by a number of Australian patient organisations and charities.  Prof Marshall-Gradisnik and the team have patented a diagnostic biomarker and assessed potential treatments. Prof Marshall Gradisnik is an author of the International Consensus Criteria for ME.
7. Dr Kathy Rowe is a paediatrician at the Royal Children’s Hospital in Melbourne with more than 45 years experience, specialising in chronic fatigue syndrome and myalgic encephalomyelitis. Dr Rowe was one of the authors of the 2002 Australian CFS guidelines and the 2017 Primer on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People.

NHMRC consumer representatives are responsible for providing a comprehensive and informed understanding of the perspectives and dynamics of patients. The two consumer members on this committee:

1. Simone Eyssens is a volunteer member of Emerge Australia and ME Action.  Sally Missing is the president of Emerge Australia and is Ms Eyssens’ support person/proxy.
2. Penelope McMillan is president of South Australia’s state ME/CFS society.

The advisory committee held one meeting last year and one meeting so far this year. The NHMRC published a short summary of each meeting afterwards on their website.

Systematic reviews and current literature was discussed at the first meeting, which continued at the second meeting, as well as a discussion on a biobank and the UK’s treatment guidelines.

The next meeting will be in May.

To contact the NHMRC about the committee, email ME_CFS@nhmrc.gov.au.

Read next: ‘Making the most of the NHMRC advisory committee‘.