Adam Bandt (Melbourne, Australian Greens) Share this | Link to this | Hansard source

A little while ago, I met Krista Callinan, a constituent of Melbourne who came to one of my events. She told me that she had myalgic encephalomyelitis, or ME, and that she's one of millions suffering from this disease. She opened my eyes to it. According to the global campaign Millions Missing, the effects of ME are devastating enough to leave 25 per cent of sufferers housebound or bedbound and an estimated 75 per cent unable to work. ME affects millions around the world, yet it remains largely invisible. In Australia, it's estimated that around 200,000 people have ME, but we don't even know to the nearest 100,000 how many people have got it, which shames us. But we do know that 75 per cent of them are women, and we do know that, over the last 16 years, ME has received an average of 53c per patient of funding a year.

There are no government programs supporting ME awareness in Australia, there are no approved pharmaceutical treatments and, sadly, there is no cure. There's not even a nationally agreed set of diagnostic criteria in Australia, so many patients face a challenge just being diagnosed. And, when they are diagnosed, many of them are advised to seek counselling or physical therapy. Imagine if we told someone who had cancer just to go and see a counsellor or to exercise a bit more. That is what is happening to these people.

I was pleased to attend a forum last month run by the support and advocacy group Emerge. They launched Unrest, a film documenting Jennifer Brea's struggle with ME. I want to congratulate them and their co-hosts on the event and their ongoing advocacy. It's critically important. It's time to take this seriously and increase funding and research for this disease for the hundreds of thousands here and the missing millions around the world.