by ME Australia The Mason Foundation, an Australian philanthropic foundation, announced it will invest $1 million in a biobank to collect samples for people with ME and CFS. Samples will be based on self-diagnosis and then confirmed using the Canadian Consensus Criteria (CCC). It will also store samples from healthy people to use as 'controls'. … Continue reading Australian biobank due to open next year
Meet occupational therapists from Australian Catholic University conducting research into ME and CFS.
by Sasha Nimmo Outcomes on the remaining recommendations from the National Health and Medical Research Council (NHMRC) ME and CFS advisory committee are expected to be announced in mid-2019. Prof Anne Kelso CEO NHMRC, is deciding whether to release the report ahead of the announcements. "The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee Report to the NHMRC Chief … Continue reading Research Council expects to fund ME and CFS projects in 2020
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 having a person enter the … Continue reading Severe ME: I had to fight the people supposed to help me
by Sasha Nimmo A charitable trust, the Mason Foundation, is asking researchers to submit proposals for a biobank and patient registry as well as a research project that uses the data and specimens. The trust will grant $200,000 a year for five years for the biobank project, $1 million in total. The Judith Jane Mason & … Continue reading $1m biobank project for Australia
by Sasha Nimmo Senator Jordon Steele-John this week 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 … Continue reading Greens announce ME and CFS policy
by Sasha Nimmo Senior staff from Australia's National Disability Insurance Agency (NDIA) met with Emerge Australia and ME Australia to see how they can better support people who have ME and CFS. Encouragingly, this seems to be the start of a more broad consultation approach. At the meeting, we discussed access to the scheme, how permanent … Continue reading Disability agency consults on ME and CFS
by Sasha Nimmo Australia's Health Minister, Greg Hunt, announced $3 million in medical research funding. In 2018-19 the government will spend $6 billion on Australia’s health and medical research sector. The Minister said funding will 'help researchers develop a better understanding of the cause and condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)'. This comes after … Continue reading Australian government announces $3 million for medical research
By Sasha Nimmo and ME Australia Australia's National Health and Medical Research Council (NHMRC) called for feedback on their advisory committee's draft report at the end of 2018. The report contained misleading errors, stating 99% of people recover (except in cases lasting more than seven years, the report claims the recovery rate is 50-80%). This … Continue reading Draft report wrongly claims 99% recover from chronic fatigue syndrome and ME
by Sasha Nimmo Researchers at the Murdoch Children's Research Institute in Melbourne confirmed that paediatric chronic fatigue syndrome (Fukuda criteria) causes significant disability and little is known about how common the condition is or how it is currently managed in Australia. More than half of children have to wait a year or longer before receiving … Continue reading Children with chronic fatigue syndrome often wait more than a year for diagnosis
