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February 2016 Estimates QoN ME and CFS

Scott Ludlam 19 Apr 2016

Senate Community Affairs Committee


Additional Estimates 2015 - 2016, 10 February 2016

OUTCOME:  1 - Population Health

Topic: NHMRC Grants



Perhaps I could put these on notice, given how late it is and how close we are to close of play. You also identified that there is no federal funding outside of the NHMRC grants you identified. Actually, I think this came through the secretary rather than from you. I am just wondering: with the other things we have identified, there is no  accredited training listed on RACGP that we have been able to find; there is no other dedicated training funded for nurses or allied health staff that we have been aware of. Have you been able to identify anything since last October where anything up to 460,000 people appear to be going without any material support at all? Have you been able to find anything  in the system?


Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex medical condition the cause of which is not understood and for which there is currently no definitive diagnosis.

The Government is committed to supporting clinical research into ME/CFS. Since 2005, the National Health and Medical Research Council has provided $1.392 million for such research.

Like all Australians, people affected by ME/CFS have access to high quality health care and medicines - particularly through Medicare, the Pharmaceutical Benefits Scheme and the Private Health Insurance Rebate - to assist with management of their conditions.



Do you know either, off the top of your head or from information that you have there at the table whether any of those four research papers were recommending or investigating either cognitive behavioural therapy or graded exercise therapy? Or were they unrelated to that?


A total of four National Health and Medical Research Council grants were identified as being related to investigations on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Three of the grants were not directly recommending or investigating Cognitive Behavioural Therapy/Graded Exercise Therapy (CBT/GET).

The fourth grant investigates two separate areas of health: hepatitis C and CFS. In the latter, the grant investigates genetic and other factors contributing to related fatigue conditions (post-infective fatigue syndrome and post-cancer fatigue) and also aims to optimise CBT/GET management programs for ME/CFS and to disseminate the treatment to other centers nationally and internationally.  The details of this grant are as follows:

Grant ID:                              1043067

Awardee:                              Professor Andrew Lloyd

Grant type:                           Research Fellowship

Administering Institution:   University of New South Wales

Award duration:                   2013 - 2017

Award total:                         $549,592



Yes, if you could. What would a clinical advisory group do in the context of what I think Senator Madigan was advised on Lyme disease? What do such entities do?


A clinical advisory committee is a time-limited group of mostly clinical experts in a particular field which is formed to provide advice to the Chief Medical Officer. While the advice provided by a clinical advisory committee may contribute to decisions and policy development within the department, these committees do not make decisions, nor do they develop government policy. The two most recent clinical advisory committees were on Lyme disease and on PIP breast implants.



I am wondering whether the government would consider funding a group like Emerge Australia to continue their work on improving the quality of life?


The Health Peak and Advisory Bodies Programme has been established to fund community organisations for activities that support national secretariat functions, consultation with members on policy and programme issues, information sharing on health policy, and the provision of informed and impartial advice to the Australian Government.

As published in the Health Peak and Advisory Bodies Programme Guidelines, grant funding under the Programme will only be provided to peak bodies that are constituted for public purposes and represent national memberships. Some organisations can also form consortia to deliver activities. Emerge Australia would be eligible to apply for funding under any future funding round for the Health Peak and Advisory Bodies Programme. Any future funding rounds will most likely not occur until 2019.


Other funding opportunities may be made available under the range of programmes that will be established in 2016 as part of the consolidation of Health's Flexible Funds. The Department's Tenders and Grants web-page lists all current grants and provides a link to the AusTender site for all current tenders.

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