In November, our CEO, Dr Heidi Nicholl met with the Honourable Chris Bowen, Member for McMahon in NSW to discuss the issues around ME/CFS.

The great news is that as a result of that meeting, in early December, Chris Bowen gave a statement to Parliament about ME/CFS. He thanked Heidi for meeting with him (she was in the gallery to watch his speech). He also acknowledged Susan Hutchison, an ME/CFS advocate who had also traveled to APH to watch the speech in person (Susan is based in Canberra), and Patrick Gorman, Federal Member for Perth for letting him know about the many issues people with ME/CFS face.

You can click on the image below to watch Chris’s speech.

Having a paper about ME/CFS tabled in Parliament is fantastic because it truly raises the profile of ME/CFS as a neglected biomedical illness. The issues around ME/CFS are now marked on public record, especially the need that people have for telehealth and it brings new and welcome credibility to the work that Emerge Australia is doing.

It is also brilliant to see the ALP making this speech. We know we have the support of the current Department of Health thanks to our current funding, which we are deeply grateful for. The Australian Greens have a well-developed policy for people with ME/CFS and now we know that we enjoy the support of Mr Bowen and his team in the Shadow Health role.

The outline of the speech

Chris Bowen began by estimating that the number of people suffering from ME/CFS in Australia could be as high as 250,000. He went on to describe ME/CFS and the degrees of severity, saying it is important to understand that it is a real and complicated condition.

He highlighted the importance of having telehealth available for people suffering with ME/CFS, as it can be difficult for them to get to a doctor’s appointment. He also mentioned there are issues with Centrelink and NDIS access.

In summing up, he commended the recent Medical Research Future Fund Grant, but called for more research into the condition, so that it can be better understood and supported.

Our advocacy work

Emerge Australia is continuing to work hard to raise awareness of ME/CFS, so that more knowledge and understanding can bring improved medical, financial and support services to people with ME/CFS and their families. Raising the profile of ME/CFS in Parliament has been one of the many ways we are achieving this.

(Banner photo by Michael on Unsplash)