Severe ME: I had to fight the people supposed to help me

young girl in eye mask lying in darkened room

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

Write to candidates before the election: letter template

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

Greens announce ME and CFS policy

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

Australian government announces $3 million for medical research

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

Draft report wrongly claims 99% recover from chronic fatigue syndrome and ME

Draft for Public Consultation - report to the NHMRC CEO

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