Australia’s Health Minister listening to people with ME

by Sasha Nimmo

Australia’s Health Minister, Greg Hunt, listened to people with Myalgic Encephalomyelitis (ME), families, scientists and organisations. Minister Hunt had a second meeting with ME Australia, along with Prof Paul Fisher, head of microbiology at La Trobe University and Dr Heidi Nicholl, Emerge Australia on Thursday.

ME Australia and Dr Chris Armstrong first met with Minister Hunt earlier this year. Minister Hunt heard about the impact of ME directly from a person living with severe ME and he wanted to know how he could help. Dr Armstrong and ME Australia talked about the advances Australian scientists had made in understanding ME.

The Health Minister, Dr Armstrong and ME Australia discussed the need to provide dedicated biomedical research funding to support promising Australian science and how medical research in Australia is under threat due to a lack funding, as it relies on mostly small philanthropic grants. At the conclusion of this meeting Minister Hunt asked for a further meeting.

On 29 November, ME Australia was pleased to be joined by Prof Paul Fisher, representing the ME/CFS Discovery Research Network (network of collaborating biomedical researchers across four universities in Victoria and the ANU), and Dr Heidi Nicholl from Emerge Australia about the opportunities for biomedical research and how support services can help people struggling with ME.

It is encouraging the Minister recognises ME is biomedical and that it is a serious, chronic, complex and multi-system disease, which frequently and dramatically limits the activity of those affected. Minister Hunt understands the importance of removing the stigma associated with this illness and the role of support services. He also acknowledged there is a case for accelerating biomedical research to develop better diagnostic methods and treatment for ME.

Whilst the Australian clinical guidelines are in the hands of the NHMRC, which is an independent statutory authority, Minister Hunt heard about the damage that is done by its recommendations and how it has resulted in stigma and misdiagnosis. More than 60% of people diagnosed with chronic fatigue syndrome in Australia don’t meet the criteria for ME, while others can take years or decades to be properly diagnosed.

The second meeting with the Health Minister was the culmination of efforts over a long period of time, speaking to politicians about the reality of living with ME and the promising biomedical research giving hope to people with ME.

Thank you to Christine Hunter AM of the Alison Hunter Memorial Foundation, Dr Chris Armstrong, Prof Paul Fisher, Associate Prof Brett Lidbury, Fane Mensah, Dr David Tuller, Equality Rights Alliance, Dr Heidi Nicholl from Emerge Australia, Eleanor Flowers and the Hummingbirds’ Foundation for ME.