by Sasha Nimmo
In December last year, a petition signed by 702 people was sent to Australia’s University of New South Wales (UNSW) Vice Chancellor Prof Ian Jacobs;the Mason Foundation; the federal health minister and the National Health and Medical Research Council (NHMRC) asking them to stop UNSW’s trial of an education module for health professionals. The trial module treats chronic fatigue syndrome patients with graded exercise therapy and cognitive behaviour therapy (GET/CBT), despite the evidence showing these therapies have no benefit and may cause permanent harm.
This morning I spoke to the UNSW Vice Chancellor’s office who said they have received and noted the petition and “the matter is under investigation”.
The Vice Chancellor’s office could not say whether this was an internal investigation or whether they would be seeking external expertise. They could not say when the investigation was likely to be concluded. The office’s Cassandra Williams said it would depend on the outcome of the investigation as to whether they would make a public statement.
They did say they would write to me after the investigation finished.
What was the petition?
The petition asked UNSW to stop the trial and asked the Mason Foundation, NHRMC and the Health Minister, who provided funding to the trial, to withdraw funding. See the response from the Mason Foundation and the Health Minister.
The trial registration says “despite GET and CBT being widely acknowledged as best-practice interventions for CFS, the great majority of patients in Australia are not receiving these appropriate evidence-based interventions. Recent studies have demonstrated that the reason for this documented gap between research and practice is largely due to practicing health professionals lacking the knowledge and skills to provide appropriate care. ” It does not specify which ‘recent studies’ and it is not accurate that it is ‘widely acknowledged as best-practice’.
It poses an international risk, as UNSW plan to “disseminate the treatment to other centers nationally and internationally”, according to information the University provided to the National Health and Medical Research Council.
Thank you again for signing this petition and for your comments.
Comments from people who signed the petition
8 thoughts on “UNSW graded exercise therapy trial under investigation”
Wow awesome news Sasha. Congratulations and thank you on behalf of our ME community.
It’s an important issue and I’m really grateful to the people who signed the petition, some of whom are extremely sick. I’ll keep asking questions. Thank you Anna.
This is excellent news. People around the world will be watching this carefully. A favorable decision will boost morale of advocates everywhere, and add to the evidence base that we need to pursue legal action.
I’m glad it is being investigated at UNSW but disappointed that the Australian government doesn’t look more closely at concerns about harmful research.
Let’s see what happens. Thanks for reading and commenting.
Alem Mathees’s marathon 5 year pursuit of this truth is finally being heeded. Well done, Australia. We are watching from the UK with a bated breath, as, conversely, little heed has been taken here so far.
Researchers, in Bristol UK, have redirected their faulted and dangerous practice onto juveniles.
734 children will be abused. A new generation of chronically ill people. They could just bleed them, or apply leeches.
I’m so scared for those children and their families. Let’s hope we can change things.
Thanks for reading, Anita.
There is also a rehab program offered by the Royal Talbot (as part of Austin Hospital I think) which I undertook and I started off OK but by the end I was using a walking stick for the first time. This program is based entirely on pacing, meditation, GET and CBT so basically the PACE trial and I wonder how it can continue (but continue it does), it would be great if a similar petition was sent about this?
I’d happily support a petition if you, or someone else, could start one.
Did you write to the state Health Minister, chief medical officer or the head of the hospital about your experience and what the evidence shows?
It isn’t a program endorsed by the state association, Emerge, is it?
Thanks for reading.