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.
Author: Simone E
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.
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!
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.”
Australia’s NHMRC has released the ME/CFS Advisory Committee’s draft report for public consultation. The public consultation process will remain open until Monday February 18, 2019.
Emerge Australia has released a report on the findings of a survey of more than 600 Australians with ME/CFS. The National Survey of the Health and Wellbeing of People with ME/CFS was carried out in conjunction with ASDF Research, and highlights the need for greater understanding of ME/CFS in Australia.
Australian Ricky Buchanan has written a much-needed report about the issues facing bedbound and homebound people in getting access to medical care.
A member of #MEAction Network Australia has written a primer, outlining the flaws in the GET research and explaining why GET is likely to be harmful for people with ME/CFS.
Australia’s National Health and Medical Research Council (NHMRC), the Australian equivalent of the NIH, has announced the establishment of an ME/CFS Advisory Committee to advise NHMRC’s CEO, Professor Anne Kelso, on current needs for research into ME/CFS, as well as clinical guidance on the diagnosis and treatment of the illness.
Urgent call to action! We need all hands on deck for a simple, but important task! The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition. It’s crucial that we take action now!