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

Andy

Andy

Retired committee member
Australia’s National Health and Medical Research Council (NHMRC) appointed a group of medical professionals and people representing people with Myalgic Encephalomyelitis and chronic fatigue syndrome to an ME and CFS advisory committee. The committee, who have begun meeting, will advise the government on current research, gaps in research and whether the 2002 clinical guidelines for doctors should be revised.

The NHMRC did not put out a call for applications for positions on the advisory committee, unlike the USA’s Department of Health and Human services does for it’s Chronic Fatigue Syndrome Advisory Committee. Nor did it follow the UK example and hold workshops with stakeholders before recruiting a guideline committee.
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https://www.meaction.net/2018/05/22...me-and-cfs-research-and-treatment-guidelines/
 
That's a very nice piece by ME Action Australia.

It calls for greater transparency from this important committee, with published agendas and minutes. Communication with the two patient organisations represented on the committee might be a way to encourage that transparency.

Sarah Knight is mentioned as an academic who should be consulted on ME/CFS matters. My son has participated in research conducted by her; there were significant problems with this research. For example, the study was titled 'Understanding CFS' but the 6-monthly survey had no questions about PEM and a very large proportion of questions relating to phobias, anxiety, sleep hygiene and facilitation of illness by parents. There are issues about the accuracy of the diagnosis of the participants.

A recent study by Knight on Sleep and Anxiety in young people with CFS had a very small sample size (drawing people from the pool of young people who participated in the 'Understanding CFS' study) and was confounded by 80% of the CFS participants regularly taking melatonin and other drugs that potentially affect sleep. Sarah Knight presented at a UK CMRC conference at a time when participation was highly suggestive of support for BPS views.

I suggest that ME Action do a bit of digging before continuing to promote Sarah Knight as an expert in ME/CFS. Maybe she is fine, but I have no evidence to support that view.
 
The balance on the committee makes me hopeful.

There's the two patient organisation reps, who should be well informed.
Kathy Rowe is a sensible clinician with a lot of experience with young people with ME/CFS.
Sonya Marshall-Gradisnik is on record as being against CBT and GET, and obviously in favour of more biomedical funding.
So, that's 4 who hopefully can be relied on to not direct funds to BPS studies.


In the CBT/GET camp, there is Prof Lloyd and probably Prof Broadbent. - so 2.

The chair seems solidly biomedical; Prof Ankeny's subject is ethics and so she may grasp the issues around theories of psychosomatic illness; Dr Deed is an integrative physician who sees ME/CFS patients. That's 3 who could go either way but all of whom may be more useful than not.

I'd be interested to hear other people's analysis of the committee composition.
 
Hutan said:
I suggest that ME Action do a bit of digging before continuing to promote Sarah Knight as an expert in ME/CFS. Maybe she is fine, but I have no evidence to support that view.
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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.
 
Hutan said:
There's the two patient organisation reps, who should be well informed.
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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.]

Dr Deed is an integrative physician who sees ME/CFS patients.
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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.
 
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Art Vandelay said:
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.
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.
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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.
 
Art Vandelay said:
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.]
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Thanks for the vote of confidence! :)
 
Rossy191276 said:
I second that @Art VandelayI 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.
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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
 
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