Australian Greens MP, Adam Bandt, formally tabled a petition for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in Parliament on Dec. 4th.
The Emerge Australia petition asks the National Disability Insurance Agency (NDIA) to collaborate with the ME/CFS community to develop appropriate guidelines for National Disability Insurance Scheme (NDIS) assessors, and for ME/CFS to be added to List B of permanent conditions for NDIS. Close to 1,4000 people signed the petition.
Adam also made time to meet with Emerge Australia to discuss the NDIS petition as well as other key priorities for Emerge: the need for increased biomedical research funding, updated Australian clinical guidelines and improved support services, as well as the need to reduce the stigma associated with the illness.
If you’d like to thank Adam for his ongoing support for the ME/CFS community, feel free to send him an email, which we know he and his staff read and appreciate: [email protected] Or, leave a comment on his Facebook page.
Up to 240,000 Australians are struggling with ME. It is a chronic, multi-system illness that has a devastating impact. An estimated 25% of people with ME are left bedbound, and 75% 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.
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3 thoughts on “Australian MP Introduces Petition for ME in Parliament”
When U have “Chronic Fatigue Syndrome”/Fibromyalgia Or Myalgic Encephalomyelitis (Sleeping Sickness),U Feel like U want to CONSTANTLY SLEEP & U FEEL AS WEAK AS A CHILD!!… 🙁 – U Can’t think/hardly remember Anything,etc,etc… 🙁 I’ve had it since 1987 here in Hull,UK…. 🙁
I thank Adam Brandt for speaking out on ME, CFS and creating awareness of this insidious illness.
I pray that the UK will wake up to the effects that this is having, not only on the individuals and their loved ones but the economy of the country itself.
MP’s , need to wake up to this travesty .
Lets start with questions in Parliament!
I am so glad you are pursuing support for M.E sufferers. Here in Canada there is very little public attention paid to this illness and I have suffered the strange looks of disbelief when I tried to explain my limitations to my “friends” who soon dropped me as they were not prepared to understand (nor interested) why I couldn’t go to group lunches and do group breakfasts, and why I needed to have one on one shorter visits.
This devastating disease afflicted me after a severe infection with a flu that left me bed bound for 2 weeks. I knew my body was different after “my recovery from the flu.” I lost my stamina for exercise, felt widespread muscle pain, had memory deficits, vertigo after trying to walk for exercise, tremors in my hands when under stress, poor sleep, and terrible night sweats. It took years for me to accept my limitations, and my G.P diagnosed me with depression. He even discouraged me from seeking out a firm diagnosis with a clinic in Toronto, but I urged me for a referral. There I could lay the groundwork for years later applying for Canadian Disability pension as by that time my sleep was severely affected, my bladder, bowel and stomach not working properly, and I had severe myofascial pain after discontinuing an anti depressant that was putting mega pounds on me. My ability to participate in regular life activities is deeply affected: for years I continued to work but had no social life and had to rest for the evening and go no where.
Please keep on with this fight. It is so very important. I hope and pray someday there will be an effective treatment that restores energy stores in people like me. I’ve had this for 20 years and it can get very discouraging. One little misstep in limiting myself and I am bed bound.
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