Australian National Health and Medical Research Council creates a ME/CFS Advisory Committee

[Andy]

Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS) is a highly debilitating disorder characterised by multiple symptoms including profound fatigue, muscle and joint pain, gut disorder and cognitive impairment. These symptoms are often triggered or worsened following physical or mental exertion.

The aetiology or underlying mechanism of the illness has not been defined, and its diagnosis remains a challenge in the absence of a biological or clinical test. Diagnosis currently relies on differentiating between other diseases and disorders, as well as self-reported symptom-based criteria. Increasing community interest in Australia focuses on improving our understanding and treatment of ME/CFS.

ME/CFS Advisory Committee
NHMRC has established an ME/CFS Advisory Committee (the Committee) under section 39 of the National Health and Medical Research Council Act 1992. The Committee will consider and advise the NHMRC Chief Executive Officer on current needs for research on ME/CFS and clinical guidance on its diagnosis and treatment.

Terms of Reference
The Committee will advise the Chief Executive Officer of NHMRC on the:

1. status of national and international research into ME/CFS
2. gaps in research on ME/CFS. This will include but not be limited to research on the immunology, psychology, microbiology and virology of the conditions, as well as any health services research
3. status of clinical guidance on ME/CFS available to doctors and health professionals
4. requirements and opportunities for improved clinical guidance
5. any other issue on ME/CFS that the NHMRC Chief Executive Officer may request.

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

 

[Valentijn]

These symptoms are often triggered or worsened following physical or mental exertion.

Often? No wonder they have diagnostic problems

But this has a lot of potential, if it doesn't get hijacked by quacks.

 

[Valentijn]

The committee consists of:

 

[Andy]

I've heard on the grapevine that Lloyd is the (most?) problematic one from that list, with a belief in the mystical power of CBT and GET.

 

[Valentijn]

Professor Kwun Fong looks like a solid biomedical researcher, primarily involving lung disease, and with no history involving ME/CFS.

Dr Gary Deed is a clinician who tends toward using a naturopathic approach, but it sounds like he integrates it with mainstream biomedical treatments. He's extremely well-recommended by many ME/CFS patients in Australia.

Professor Rachel Ankeny has a very diverse background, involving philosophy, bioethics, and social issues. She recently co-authored a chapter about different national approaches creating ME/CFS clinical guidelines, and it sounds like it was pretty harsh on the 1996 UK guidelines for excluding patients from the process and assuming that the answers regarding treatment and such must already exist. They also called out the UK government for later involving the DWP, and thus incentivizing saving money with a psychiatric approach. So she seems to be very much on the side of patients and careful scrutiny of research.

Associate Professor Suzanne Broadbent is a GET fanatic who believes deconditioning is a factor in ME/CFS, and has run symptom-dependent GET trials. She incorporates objective outcomes, but combines them with poor methodology.

It sounds like Professor Andrew Lloyd used to do biomedical ME/CFS research, then switched to BPS, and now spends his time promoting CBT/GET and attacking biomedical research.

Professor Sonya Marshall-Gradisnik does a lot of good biomedical ME/CFS research, but her team also can get a bit dodgy when it comes to statistics, especially with SNP studies.

Dr Kathy Rowe is a pediatrician who did some research into IVIG for ME/CFS 20 years ago, and more recent research regarding hypoglycemia versus OI accounting for some symptoms in children. She seems to be primarily a clinician rather than a researcher, and may not be great at evaluating the evidence for therapies like CBT or GET, though seems to promote pacing instead anyhow.

So it looks like there's only two turds floating in the punch bowl, which should be manageable for the other 7 members of the advisory committee

 

[Tom Kindlon]

 

[Dial It In]

I have been trying to put pressure on the NHMRC acting Executive Director to get Andrew Lloyd booted.
Her name is Jillian Barr:
jillian.barr@nhmrc.gov.au

As expected, I got placated.

I think I will contact Sonya Marshall-Gradisnik to get her opinion on whether Lloyd can be ‘handled’