Australian philanthropic trust the Mason Foundation will establish the first Australian national ME/CFS biobank and patient registry, with a $1 million grant. The grant consists of two components: the biobank and patient registry, and a research project which uses the samples stored in the biobank. This is significant news for the Australian ME/CFS community, and has been picked up by mainstream media.
The final report from Australia’s National Health and Medical Research Council’s (NHMRC’s) ME/CFS Advisory Committee, established in late 2017, has been released. The committee was tasked with advising NHMRC’s CEO on current needs for research and clinical guidance for ME/CFS in Australia.
Originally published on ME Australia. by Sam* Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says even
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we want to share more of your stories. While not all of these stories fit into
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]I miss teaching. I miss making a difference.[/pullquote] Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from people’s lives. People with ME may struggle with their identity through the loss or great change in their careers. Below are stories of individuals who found their careers
Australians with ME/CFS are routinely rejected from the country’s National Disability Insurance Scheme (NDIS), because the Australian government doesn’t consider ME/CFS to be a permanent condition for most living with the illness. Sign this petition to support Aussies with ME/CFS and demand policy change!
Senator Jordon Steele-John has announced the Australian Greens’ policy on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), planning to commit $15 million to biomedical research, a national summit, better access to the National Disability Insurance Scheme (NDIS) and money for advocacy organisations. This policy is welcomed by the ME and CFS community in Australia. The Australian Greens
Australia’s Health Minister Greg Hunt has today announced $3M for research into ME/CFS. Minister Hunt notes that “funding will be provided through the National Health and Medical Research Council (NHMRC) to help researchers develop a better understanding of the cause and condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Diagnosis of ME/CFS is difficult, with no diagnostic test and a diverse range of symptoms. Research will drive a better understanding of the condition along with its causes and the mechanisms that lead to its debilitating symptoms.”
A recent study of Australian teenagers with chronic fatigue syndrome found CFS impacted their development of academic, cognitive and social skills. Students with CFS missed an average of 42% of classes over a term, 37% more than their healthy peers. The study recommends school staff be trained to understand chronic fatigue syndrome and its impact
‘Meet the Scientists’ is a series of interviews with researchers working on ME and chronic fatigue syndrome. We ask them about their current research and get to meet the people working to improve our health. The series introduces early career researchers through to interviewing scientists and clinicians who have been working on the problems for decades.