by Sasha Nimmo On Saturday 18 May a federal election will be held in Australia. This is your chance to write to local House of Representative and Senate candidates to ask them to commit to funding biomedical research into Myalgic Encephalomyelitis, or ME. Below is a sample letter to personalise or to help you write your … Continue reading Write to candidates before the election: letter template
by Anthony Clarke Anthony Clarke of BLOXAS, an architecture practice for empathic and experimental architecture, was contacted by a South Australian woman with ME to design a home for her. His research led him to a screening of 'Unrest' and a friendship with Anna Kerr, who also has ME. Anthony and Anna recently presented at … Continue reading Architect Anthony Clarke’s designs for 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
by Sasha Nimmo A paper published in Metabolic Brain Disease by Morris, Maes, Burk and Puri suggests Myalgic Encephalomyelitis develops because of genes responsible for immune responses. Their paper discusses how molecules may convert an acute infection into a state of escalating chronic systemic inflammation. Morris and Maes have written extensively about chronic fatigue syndrome … Continue reading Molecules may convert acute infection into ME
by Sasha Nimmo Emerge Australia is hosting an international research symposium on the biological basis, diagnosis, treatment and managment of Myalgic Encephalomylitis and chronic fatigue syndrome in Geelong (near Melbourne), Australia. Parts of the symposium will be live-streamed here. On Wednesday 13 March, Griffith University's Professor Sonya Marshall-Gradisnik and Professor Donald Staines will chair a … Continue reading Australia hosts research symposium on ME and chronic fatigue syndrome
