Eating Disorders: Why Experiences of Treatment and Recovery Matter to Research

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

If you are struggling with eating right now, please talk to your doctor or a local eating disorder helpline. Sharing your story can wait.

Recovery from an eating disorder rarely follows a straight line. People and families describe long waits for help, treatments that did not fit, a therapist or a moment that changed things, and setbacks along the way. What helped, what did not, and how long each step took are questions research on eating disorder care is still trying to answer, and the people who went through it are the ones who know.

How many people are affected

According to the WHO, "in 2023, 18 million people experienced eating disorders, including 4.7 million children and adolescents". The Global Burden of Disease study found that the age-standardised rate of new cases rose to 124.4 per 100,000 in 2021.

The records worth keeping

NICE's guideline on eating disorders describes the care that leaves records:

• Therapy records: individual CBT for adults with anorexia typically consists of up to 40 sessions over 40 weeks and includes self-monitoring of what is eaten and the thoughts and feelings around it.
• Yearly health reviews: GPs should offer a physical and mental health review at least annually to people with anorexia who are not in ongoing treatment, with relevant blood tests.
• Physical checks where needed: fluid and electrolyte tests, ECG monitoring with some medicines, and a bone density scan after a long period of being underweight.

Clinic letters and a summary of the treatment you had, in your own words if you have nothing else, are enough to start. If you want copies of your records, ask the service that treated you.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete eating disorder story with the records the guideline lists comes to about $92 per licence on the benchmark today. Every line and its source is on the eating disorders page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

On your own terms, and for families

You decide what to share, and nothing asks for more than you choose to say. You read the de-identified summary before anything goes anywhere: no names, no place finer than a country, no exact dates, and you can withdraw at any time. Parents and partners who supported someone through an eating disorder can share that story too, as their parent or guardian or with their permission; the record then notes that a carer told it.

Start your story, or read is it safe to share your health data first.