This thread focuses the information about the Australian situation in David Tuller's recent blog. It has been split from this thread which focuses on the news about Esther Crawley in David Tuller's recent blog. http://www.virology.ws/2018/03/14/t...ituation-and-professor-crawleys-new-position/
There was also a great Q and A with Penelope McMillan about the plight of ME sufferers in Australia. I will try and post a link.
I hope that the content of this Q and A is brought to the attention of mainstream media in Australia.
I have set up a thread with the three videos in the correct order. https://www.s4me.info/threads/emerge-q-and-a-with-david-tuller.3023/ hope they work ok.
Just to clarify: There are now two separate Q and As referred to above. 1. David Tuller and Penelope McMillan in David Tuller's blog 2. Emerge and David Tuller in the series of videos from the public meeting in Melbourne on 16 March 2018. Thanks to @Sly Saint for posting the videos. Both of these Q and As are worth looking at if you want to inform yourself about the situation in Australia.
Thank you @AndyPandy. I was just trying to work out how to say what you have said so clearly. The written Q and A in David Tuller's blog is a good summary of the situation in Australia and should be useful for journalists wanting background.
The following is from the first Q&A - part of a reply by Penelope McMillan: "PACE has had a significant influence in Australia, through PACE materials included in the Royal Australian College of GPs’ website. Approaches by patients and GPs to have the materials removed from the website have been unsuccessful to date. The CBT/GET requirement pervades Centrelink, the NDIS, the insurance industry, and many GPs’ approaches. PACE is also a major part of the Cochrane reviews for CFS. The Commonwealth Medical Officer confirmed that federal government policy is based on the Cochrane reviews." ... Can anybody help identify documentary evidence supporting these assertions? I've found this clinical practice guideline on the RACGP's website, endorsing GET: https://www.racgp.org.au/your-pract...xercise-therapy-for-chronic-fatigue-syndrome/ The RACGP's website also links to pro-PACE articles in its journal, Australian Family Physician (AFP) but, in fairness, not all AFP articles on ME are pro-PACE. Has Centrelink or NDIS published anything about requiring CBT/GET? Has the CMO confirmed the federal government's adherence to Cochrane in public?
They have not published anything but numerous patients have received rejection letters for: - dsp by Centrelink on the basis of not being fully treated because they haven’t done GET - NDIS on the basis that ME/CFS is not a permanent condition because GET leads to significant recovery.
Is there documentary evidence of this available? I've seen lots of people reporting it, but it's always ideal to have copies of the documents.
I am working on this issue...and doing some lobbying. I have a meeting with someone from the agency that administers NDIS tomorrow.
There’s a facebook group dedicated to this issue where patients are compiling their rejection letters
