Episode 11: Anne Wilson (Emerge Australia) - ME/CFS, Medical Bias, and the Costs of Not Listening

I feel like there's so many questions I want to ask you and I'm conscious we've only got you for a limited amount of time.

But I think it would be really exciting and helpful for people who are potentially maybe not as familiar with Emerge Australia and the work that you do.

Would you mind giving us a bit of an overview as to what Emerge does and maybe the role it plays for people who are living with ME in Australia?

Yeah, sure.

Well, Emerge Australia has been around for a while, you know, about 20 or 30 years actually.

And particularly in the last five or six years, we've really ramped up our work across, as you said, education, advocacy, research and support.

And we are the leading patient organisation in Australia for people with ME-CFS.

And our work really spans across clinical education because that's what patients tell us is the biggest issue.

Where do I find a doctor that knows anything about ME-CFS? So that is one of our major pillars of the work that we do.

We also, of course, advocate for health policy change and inclusion in health policy, not only from a service delivery perspective, but in collecting data about ME-CFS, which I can talk a little bit more about later on.

It's going to happen for the first time this year through the Australian

Institute of Health and Welfare.

We also run a biobank.

So biomedical research is an area that we're heavily involved in.

I've got two scientists working on our tiny, tiny team.

And we have a biobank.

We collect bloods from people with ME-CFS, long COVID, and healthy controls.

And we also run a patient registry that So we've currently got over 2,500 people on our registry and we've got 25 research projects around Australia that are utilising our data.

and our bloods for their research work.

So research is a really important part of our work and we do that research in conjunction with La Trobe University in Melbourne.

Then finally, the major part of our work as far as reaching out to patients is concerned and supporting them is our patient support.

health services and they span both information services and direct service delivery to patients through our telehealth service.

So that service supports people not just with MECFS, we support people with range of overlapping conditions.

So it's MECFS, it's long COVID, it's other energy limiting conditions, it's post-infection fatigue syndromes, and also mitochondrial disease, connective tissue disorders, fibromyalgia.

So we do that not just through telehealth, but through our learning management system that we've developed online.