Medical council agrees new guidelines are needed

by Sasha Nimmo

National Health and Medical Research Council’s Chief Executive Officer, Prof Anne Kelso, today released her response the ME and CFS advisory committee’s report.

Prof Kelso has decided that the NHMRC should develop clinical guidance on ME/CFS. This is a major decision as the current guidelines were condemned by the Senate and organisations as soon as they were released back in 2002, saying they misrepresented the illness, made harmful management suggestions and had a bias towards a psychiatric-psychological approach to the illness. (ME/Chronic Fatigue Syndrome Association of Australia 2002)

“We also need to identify a funding source to develop the guidance,” Prof Kelso’s response said.

The National Health and Medical Research Council (NHMRC) has not replaced the 2002 Australian chronic fatigue syndrome guidelines despite the fact the NHRMC’s own regulations stated the guidelines were to be replaced after 10 years. In 2013 the NHMRC met with Emerge (then ME/CFS Australia (Victoria)) to discuss updating the Guidelines. They were due in 2014, according to information NHMRC published on its website. 

Monitor international research

“NHMRC will continue to monitor international research efforts and how they might interact with Australian research. I will also consider collaborative opportunities for future research funding activities.”

This echoes Prof Kelso’s comments back in early 2016 when she discussed the importance of research with the director of the USA’s National Institutes of Health, Dr Francis Collins. Prof Kelso said NIH’s budget and capability and would be an important stimulus for the field, appearing to rely on other countries’ research rather than committing to funding until now.

Collect data on burden of disease

Prof Kelso will inform the Australian Institute of Health and Welfare (AIHW) Chief Executive Officer of the recommendation raised about collection of prevalence data and burden of disease reporting.

Every decade or so, the AIHW releases a report: the Australian Burden of Disease study.

ME and chronic fatigue syndrome were excluded from the last report. When ME Australia raised the issue, the AIHW offered up contradictory explanations for excluding ME and CFS: that no data was available for it to be included, but that they were included in ‘other neurological’.

Accessing government payments and services

“The committee has also informed me about the reported exclusion of some ME/CFS patients in accessing supportive services such as the National Disability Insurance Scheme (NDIS) and the Disability Support Pension (DSP). I will make sure the Minister for the NDIS and Minister for Government Services, the Hon Stuart Robert MP is aware of this concern.”

In March this year the NDIS met with ME Australia and Emerge to see how they can better support people with ME and CFS. The NDIS indicated it was the start of a broader consultation process.

The letter also covers grants already announced by the Health Minister and biobank funded by the Mason Foundation. Read the full letter.