IMPORTANT - ME/CFS contact at Australian National Health & Medical Resarch Council $5M grants

[Kenny Banya]

Hi guys,
I would much appreciate as many of you as possible contact:

Cathy Connor
Director Public Health
Evidence Advice and Governance
National Health and Medical Research Council

Email: ME_CFS@nhmrc.gov.au


She is overseeing the formulation of the 'expert' advisory committee to determine where the $5M research funding is allocated.

We don't want junk science quacks on the advisory board, such as 'Professor' Andrew Lloyd from the University of New South Wales, who has previously squeezed $1M for GET/CBT.

We want all the funding to go to biological research only.

If you do contact her, support your email with references to past & current biological research & drug trials.

Remember, YOU ultimately benefit from this research, because science 'stands on the shoulders of giants' & is blind to national borders.

 

[Kenny Banya]

(previous email response)

Thank you for your phone call and email to NHMRC. I am currently overseeing a new body of work that will scope what is required for improving our understanding about ME and CFS with respect to research and clinical guidance. This work will be advised by an NHMRC expert advisory committee that we are currently establishing.

The Senate Estimates to which you refer saw this issue discussed by Senator Ludlum and NHMRC’s Chief Executive Officer Professor Anne Kelso. At that time Professor Kelso indicated that she was keen to see what is happening internationally and nationally, so as to maximise any research effort and not duplicate what is already underway. Professor Kelso will consider the outcomes of this scoping activity with the Council of NHMRC before making any firm decisions or funding commitments. Thank you for the links to the research activity that you are aware of.

Once my team has completed the work to establish this new advisory committee and appoint the members, we will publish a project page on NHMRC’s website where you can keep up to date with the work , as well as the membership of this committee and any consultation opportunities.

Kind regards
Cathy Connor

 

[simeyss]

FYI, a couple of months ago (after the most recent Senate Estimates at which Professor Kelso indicated that the Targeted Call for Research (TCR), if funded, would be $3m-5m over $3-5 years), advocates organised a joint letter to be sent to NHMRC from several of our ME/CFS organisations: ME/CFS Australia (SA) (which wrote the original submission for the TCR), as well as Emerge, ME/CFS Australia, ME/CFS & Lyme Association of WA & ME/CFS & FM Association of NSW. The letter made a few key points (as suggestions):

- It highlighted the importance of the use of appropriate diagnostic criteria for ME/CFS research, and suggested that the TCR require relevant research applications to use CCC/ICC.
- Research doesn't observe national boundaries, as you said, and so the suggestion was made that NHMRC also look to the NIH's RFI process in 2016, which was an extensive needs analysis for ME/CFS research, for guidance as to the focus of the TCR and to help identify appropriate research areas or questions. NHMRC was also provided with a summary of the themes of some of the key researcher submissions to the RFI. The summary also noted that the none of the researcher submissions reviewed for the summary (more than 30) recommended further study into GET/CBT.
- Given the inherent conflict of interest of Australian researchers potentially being both on the expert panel and later grant applicants (an issue which Professor Kelso herself acknowledged), the letter also suggested that NHMRC look overseas for experts. A list of suggested experts (& bios) was provided (eg: Ros Vallings), none of which were members of the BPS school.
- The importance of consumer input throughout all levels of research was also highlighted (including in NHMRC's expert panel for the TCR), with a suggestion that consumers be included in the process.

NHMRC has followed up with ME/CFS Australia (SA), as the organisation which submitted the TCR proposal, and they have been afforded some opportunity to have input.

Whilst much is still unknown, there are encouraging signs coming from NHMRC. It's taken years for us to get to the point where NHMRC is willing to engage with the community in this way. The fact that NHMRC is considering funding this TCR is significant progress (even though it is only a once-off injection of funds, hopefully it will also impact the types of projects which NHMRC funds generally).

 

[Kenny Banya]

I'm hoping that people who have read this have emailed her

 

[Sean]

I am working on mine at the moment.

What is the deadline?