Wednesday, 5 December 2018
Statements by Members
Petition: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
I rise today in parliament to formally table a petition signed by close to 1,400 people around Australia who are living with myalgic encephalomyelitis, sometimes known as chronic fatigue syndrome. Up to 240,000 Australians are struggling with ME. It is a chronic multisystem illness that has a devastating impact. An estimated 25 per cent of people with ME are left bed-bound, and 75 per cent are unable to work. Many severely affected sufferers require complex care and disability support services. Despite this, research is grossly underfunded and people living with ME are routinely rejected for financial support, including the NDIS. Two months ago I spoke in this place about ME, after which hundreds of people contacted me or left comments to share their deeply moving stories of life with the condition. Thank you to every person who shared their story and drove home to me the reality of life with ME.
It is time for the Australian government to get serious about ME. I call on the government to work to help to remove the stigma that is still too often associated with ME. It must help change the GP guidelines to ensure that GPs better understand the disease and don't prescribe outdated and potentially harmful treatment regimes. And government must start properly funding research into ME/CFS. Over the last 16 years, ME has received an average of 53c per patient of funding a year, and that is shameful.
The petition calls on the government to end unfair rejection of NDIS applications and add ME to the list B of permanent conditions where further assessment is required. To everyone who worked so hard to bring this message to parliament, thank you. I table the petition.
The petition read as follows—
This petition of people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) draws to the attention of the House the many Australians with ME/CFS whose applications for the National Disability Insurance Scheme (NDIS) are being unfairly rejected. We ask the Australian Government to work with Emerge Australia to address this injustice.
We request for action by the House to: 1. Partner with the ME/CFS community to develop appropriate guidelines for NDIS assessors. 2. Add ME/CFS to List B of permanent conditions where further assessment is required.
from 1318 citizens (Petition No. PN0389)