From Eating Disorder Patient to Peer Researcher with Anna Carnegie

“I feel like I definitely wouldn't be able to do the job that I do or do it as well if I didn't have my own personal experience of an eating disorder.”

In this week's episode, Hannah is joined by Anna Carnegie. Anna is a Research Fellow at KCL, where she coordinates the Eating Disorders Clinical Research Network (or "EDCRN") and lends support to the UK Eating Disorders Genetics Initiative (or "EDGI UK").

Alongside her academic role, Anna brings her own lived experience of OCD, anorexia, and long-term recovery. She now uses that experience to shape research, advocate for better funding, and push for eating disorder studies that truly centre the people they’re supposed to help.

This week, we discuss:

The huge funding gap in eating disorder research and why it matters
What EDCRN and EDGI UK are, and how they’re trying to answer basic questions about “what works”
Genetics, metabolism, and why there is no single “eating disorder gene”
The emotional burden and boundaries of working as a peer researcher
Anna’s journey through OCD, anorexia, and treatment in Ireland and the UK
How lived experience can shape research design, language, and priorities
The life-changing impact of an NHS admission that focused on life goals, not just weight
Why one-size-fits-all treatment doesn’t work and the need for truly individualised care

Timestamps:

00:00 – Introducing Anna and her roles at King’s, EDCRN & EDGI UK
04:00 – The reality of underfunding in eating disorder research
08:30 – Lived experience, stigma, and language in research settings
14:00 – Peer research, boundaries, and “naming the elephant in the room”
20:00 – Anna’s story: OCD in childhood, anorexia in adolescence, and treatment in Dublin
37:00 – What EDCRN does and why standardised outcome data is so important
42:00 – Genetics, vulnerability, the “jar” analogy, and prevention
46:00 – One-size-fits-all treatment, neurodiversity, and hopes for the future of ED care