Australia’s National Health and Medical Research Council (NHMRC) – the Australian equivalent of the US National Institutes of Health – has announced the establishment of an ME/CFS Advisory Committee to advise NHMRC’s CEO, Professor Anne Kelso, on current needs for research into ME/CFS, as well as clinical guidance on the diagnosis and treatment of the illness. The committee will sit for one year.
Terms of Reference
The Committee will advise the Chief Executive Officer of NHMRC on:
1. 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. 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.
The committee includes diverse representation with some strong allies. Significantly, the committee also includes two consumer representatives. This is the first time that patient advocates have had a seat at the table in Australia. The two consumer representatives are both well known within the Australian ME/CFS community, and are administrators of #MEAction Network Australia: Penelope McMillan was invited as President of ME/CFS Australia (SA), the organisation which initiated this process with a proposal for a Targeted Call for Research in 2016. Emerge Australia was also invited to nominate a consumer representative, and have chosen Simone Eyssens. Sally Missing and Emerge Australia will provide support to Simone, in order to minimise the impact of this role on her health.
The establishment of this advisory committee is a big step forward for ME/CFS advocacy in Australia. NHMRC has never had an advisory committee for ME/CFS before, and it is significant that the patient voice has also been included. NHMRC has been receptive to the input of the community during the process that led to the establishment of the committee, and we are hopeful that this represents a genuine want by NHMRC to understand the illness (and the needs of those who live with it) better.
This committee also represents a significant achievement for ME/CFS advocacy in Australia, as it is the culmination of efforts from several organisations and individuals, including: ME/CFS Australia (SA), #MEAction Network Australia, Emerge Australia, ME/CFS Australia Ltd, ME/CFS & Lyme Association of WA, and ME/CFS & FM Association of NSW.
This committee represents a major opportunity for change for people with ME/CFS in Australia, and we are excited by the possibilities that it brings.
The #MEAction Network Australia Facebook page will be providing updates on the committee’s processes (as much as is possible) over the coming year.
Read more about this announcement and the committee.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the