• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Higher level key contacts for Australian NHMRC $5M research funding & Senate Hearing Oct 25th

Kenny Banya

Senior Member
Messages
356
Location
Australia
BIOLOGICAL RESEARCH ONLY
BIOLOGICAL RESEARCH ONLY

Now that is cleared up, I have obtained the key contacts to pressure the Australian National Health & Medical Research Council (NHMRC) into investing the $5M into biological research only.

Samantha Robertson is the Executive Director, Evidence Advice & Governance who is overseeing the formulation of the purpose made ME/CFS research committee & who will comprise that committee.
Her email is (don’t say how you got it):

Samantha.Robertson@nhmrc.gov.au

Her personal assistant for CCing emails is Cathy Connor:

ME_CFS@nhmrc.gov.au

We don’t want psychologists, psychiatrists, exercise therapists or physiotherapists on the committee. I made it blunt to her & you should too.

Secondly, Senator Richard Di Natale has agreed to take over the broader issue from the previous Senator & champion, Scott Ludlam.
There will be a Senate Estimates Hearing for health on October 25th
Richard has asked me to direct issues & questions I would like raised at this hearing to his health policy advisor Sophie Nicolle.
Her email is:

Sophie.nicolle@aph.gov.au

It will probably be Professor Anne Kelso, chief executive of the NHMRC, as the respondent/advisor at the Senate Hearing, but I am guessing Samantha Robertson will be alongside to clarify any ambiguous points.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
Here is Samantha Robertson’s reply to my email a few days ago:

Dear Kenny Banya,

Thank you for your email.

I am the Executive Director with carriage of this work and Ms Connor has provided me with information regarding your concerns. I am aware of the UK trial and the disrepute it has attracted due to the statistical breaches – and what this means for those patients with ME/CFS whose clinicians may actually be using the information as part of their clinical care. It is important for any work that NHMRC undertakes to have a committee that represents most of the recent scientific activity. That includes knowledge of research that has been effective as well as research proven ineffective, or of no effect. After all, we do not want to be repeating research which has not provided clear evidence of any benefit.

Consumer representation will be included on the expert committee who, I am sure, will be well acquainted with the issues you are concerned about.

A webpage on NHMRC’s work in this area will be created shortly.

This will be updated on a regular basis so that you can be kept informed on progress.

Thank you for bringing these issues to my attention and I hope you have found this information useful.

Kind regards,
Samantha Robertson
Executive Director
Evidence, Advice and Governance Branch
National Health & Medical Research Council


(She cocked up a little bit & lists her mobile phone number in her email signature.
No, I’m not listing it!)
 

lafarfelue

Senior Member
Messages
433
Location
Australia
(She cocked up a little bit & lists her mobile phone number in her email signature.
No, I’m not listing it!)

Side note: That'll be her work mobile, and it's not uncommon for Executive Directors to include this in their correspondence. Very likely goes straight to her EA's phone.