Who is advising the Australian government on ME and CFS research and treatment guidelines?

https://www.meaction.net/2018/05/22...me-and-cfs-research-and-treatment-guidelines/

 

The article is a amalgamation of these two posts from ME Australia, https://meaustralia.net/2018/04/23/australian-governments-me-and-cfs-advisory-committee/ and https://meaustralia.net/2018/04/24/making-the-most-of-the-nhmrc-advisory-committee/, so I would guess it's not an official MEAction post.

 

I'm familiar with Simone and Penelope solely through their posts and activity in various Australian ME/CFS groups (mainly on Facebook). They both strike me as being extremely competent, motivated and well across the issues. Simone writes a lot of good articles that have been published widely and recently authored this primer on the controversy around GET that is endorsed by one of the local ME/CFS organisations.

[EDIT: I think Simone may have an account here and posts on occasion.]

A few friends with post-viral conditions and ME in Brisbane have seen Dr Deed and say that he took them seriously. He's not in the BPS camp.

 

I second that @Art Vandelay Simone and Penelope seem great and Dr Deed, although he seems to have taken on other interests recently shared a practice with Dr John Whiting who I see so should be quite good. I am not quite sure why they would go for Deed rather than someone like Whiting who still sees ME sufferers full time. Also a pity none of the Melbourne Bioanalytics team are involved.

 

Thanks for the vote of confidence!

 

My understanding is that NHMRC reached out to the colleges (RACP and RACGP) for nominees for the committee. RACP nominated Andrew Lloyd, and RACGP nominated Gary Deed. As a physician, John Whiting isn’t a member of the RACGP, so he would never have been an option instead of Gary. And given Andrew Lloyd’s venerated status as the “leading light” in ME/CFS in Australia [sarcasm], it’s unlikely RACP would have considered anyone else.

I agree that it’s a shame that none of the Melbourne Bioanalytics team were included.

 

Australia: National Committee will Issue Report on ME and CFS
Oct 2 Sasha Nimmo
The Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Advisory Committee, set up by the National Health and Medical Research Council to advise the government on research and clinical guidelines, has one more meeting before releasing their report for public consultation.

The ME and CFS Advisory Committee will be finalising the report at the next meeting. The same group of people are advising the government on who should be consulted. People with ME in Australia have pushed for a more transparent process and consultation with experts.

If you would like to be notified when their report is available to the public and open for feedback, email the NHMRC at me_cfs@nhmrc.gov.au.

The minutes from August and September meetings have not been published yet. Previous meetings’ minutes are on the NHMRC website.

The NHMRC have added a section ‘Information for Clinicians‘ which does not include the International Consensus Primer on Myalgic Encephalomyelitis for Medical Practitioners, the booklet endorsed and provided by Australian patient organisations to their members and to GPs. The ICC authors are the world’s leading experts, including Australia’s Prof Marshall-Gradisnik, Prof Staines and Dr Don Lewis.

The NHRMC links to a number of resources for clinicians which recommend exercise, cognitive behavioural therapy and antidepressants."

https://www.meaction.net/2018/10/02...-and-cfs/?mc_cid=23ac3c4486&mc_eid=c1fdea04b1

 

Some of those pages are now down for me, eg

https://nhmrc.gov.au/health-topics/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome

 

Archived here: https://web.archive.org/web/2018092...ncephalomyelitis-and-chronic-fatigue-syndrome

 

Updated version is here: https://nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome

I am also guessing the NHMRC will update this page with a lot more detail once they have released their report.