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 Helen Donovan May 12 is Alem Matthee's birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem's work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study's authors claimed. In 2014 Alem filed a Freedom … Continue reading A Mother’s Story: Alem Matthees
By Jac Creedon Since 2015, Adelaide Oval in South Australia has been lit up in blue in recognition of ME Awareness. This year, it will be illuminated on Thursday May 9. It has been organised every year by Jac Creedon, who has had ME for 28 years. Jac lives in Adelaide, along with her Jack … Continue reading Adelaide Oval lights up in blue for ME Awareness Week
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
