Discussion in 'General ME/CFS News' started by Andy, Nov 30, 2017.
Often? No wonder they have diagnostic problems
But this has a lot of potential, if it doesn't get hijacked by quacks.
The committee consists of:
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.
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
I have been trying to put pressure on the NHMRC acting Executive Director to get Andrew Lloyd booted.
Her name is Jillian Barr:
As expected, I got placated.
I think I will contact Sonya Marshall-Gradisnik to get her opinion on whether Lloyd can be ‘handled’
Separate names with a comma.