Millions Missing: Perth

by ME Australia member in WA

Stunning weather and a brilliant blue sky greeted everyone who gathered in the heart of Western Australia’s capital city, Perth, for Millions Missing on Saturday. Former and current Greens’ senators spoke about the health crisis of ME and CFS to dozens of people at Perth’s International ME Awareness Day event, some of whom travelled from other parts of WA to be there.

For the second year, the WA community acknowledged International ME Awareness Day with a Millions Missing event. It was held at Yagan Square in Perth city on 11 May, one day before ME Awareness Day. Yagan is a popular space in the centre of Perth, on the land of the Whadjuk people. The grassed square was allocated for the special event and shoes were placed with personal messages telling the stories of the loss of patients’ health and goals.

Stephen Le Page of the Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Lyme Association of Western Australia (ME CFS and Lyme WA) welcomed people to the event.  

The support from the Greens’ party was evident with the former senator, Scott Ludlam and Senator Rachael Siewert in attendance. Senator Jordon Steele-John was campaigning in the south west and was unable to attend. While working as a politician, Scott was instrumental in applying pressure to the NHRMC to increase research funding for ME. The level allocated for funding over the decades has been appalling.  He is still vitally interested in supporting people with ME. He spoke about the detrimental factors concerning graded exercise treatment (GET) as a treatment. Current Greens’ senator, Rachel Siewert, spoke as well and she was equally passionate. Senator Siewert is a strong supporter of people with ME and CFS, meeting with ME Australia and hearing about the latest promising research from Dr Chris Armstrong and Associate Prof Brett Lidbury in Canberra last year.

Rachel Pemberton from the Fremantle Council spoke at the event. Her sister has ME and it was lovely to hear Rachel continues to support her sister. She was at last years’ event and she said this year several historic venues in Fremantle were lit up in blue to acknowledge people with the disease.

An important person attending was Helen Donovan, mother of Alem Matthees. It was Alem’s birthday on the official International ME Awareness Day on 12 May. Alem was successful in arranging to have the flawed PACE Trial data released when he made two Freedom of Information applications. This has been paramount to the advancement of having the disease accepted as a legitimate physical illness that is not improved by graded exercise therapy and cognitive behavioural therapy.

Helen was part of a team handing out pamphlets where there was high traffic volume. There was a market day in the square, making it a popular venue.

It was well organised and a success.

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