Australia’s Health Minister refuses to stop funding trial of ‘unbelievably bad’ treatment

by Sasha Nimmo

We asked them to stop the trial and they said ‘no’. This week Australia’s groundbreaking researchers at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) again said exercise was ‘unbelievably bad’ for people with chronic fatigue syndrome and ME while UNSW persists with it.

“This is a much more debilitating illness than people have realised – people die from CFS/ME because they’re not taken seriously,” Prof Don Staines.

“The new research also suggests that [prescribing] exercise is just unbelievably bad as it can put the body under further stress.”

The National Health and Medical Research Council responded on behalf of the federal Health Minister (unnamed but Greg Hunt replaced Sussan Ley on 13 January) to the petition to ask the Mason Foundation and the University of New South Wales (UNSW) to cease the trial of graded exercise therapy for chronic fatigue syndrome, in the face of newly-released evidence from the PACE trial (which UNSW relied upon in this trial).

The petition was signed by 701 people and you can read the Mason Foundation’s response here.

The letter below acknowledges controversy but says funding decisions happen within ethics and law, by a peer review process.

In your letter, you have requested that the National Health and Medical Research Council (NHMRC) redirect funding from trials using Graded Exercise Therapy and Cognitive Behavioural Therapy for ME to biomedical research.

As the nation’s primary body for managing the investment in health and medical research, NHMRC is responsible for ensuring public funds are invested wisely and fairly to support the highest quality research.  While not without controversy, open, transparent, high quality and contestable peer review is the best approach to assessing the quality of health and medical research and ensuring that only the best and most relevant research is funded.

In this context, NHMRC’s peer review process has been developed to ensure impartial and independent assessment focusing on the scientific and technical merit of applications by individuals with knowledge and expertise equivalent to that of the individuals whose applications for support they are reviewing. All applications are reviewed and awarded consistent with NHMRC’s internationally regarded peer review process.  Research is required to be conducted in line with the application and within NHMRC’s ethical and legislative frameworks.  Subject to these requirements being met, NHMRC does not influence the research path.

NHMRC is currently funding one active grant that includes an ME/CFS research component, which is Professor Andrew Lloyd’s Practitioner Fellowship.  With regard to funding biomedical research into ME, NHMRC welcomes applications.  Eligible researchers can apply for research funding through one of NHMRC’s many schemes.  Eligibility criteria are published in NHMRC’s grant guidelines.

To be eligible to apply, researchers will need to work through an NHMRC Administering Institution.  Further information on our Administering Institution policy is available at www.nhmrc.gov.au/grants-funding/administering-grants/administering-institutions.  Details on funding opportunities, eligibility requirements and how to apply are available on the NHMRC website at www.nhmrc.gov.au/grants-funding/apply-funding.

I trust this information is of assistance.

Now that this response has been received, we are still waiting to hear from the University of NSW, despite asking them again for a response.

To refresh your memory, the petition and covering letter were sent to the trustees of the Mason Foundation, who funded the trial and the UNSW’s President and Vice-Chancellor, Prof Ian Jacobs. A copy was also sent to the (then) Minister for Health, Susan Ley, and the CEO of Australia’s National Health and Medical Research Council (NHMRC), Prof Anne Kelso, as the NHMRC have also funded graded exercise therapy and cognitive behavioural therapy trials for chronic fatigue syndrome at UNSW.  Thank you again to those who signed and supported the petition.

(Apologies for the delay in publishing NHMRC’s response, it’s due to health limitations.)