Consumer participation in mental health services has grown in recent years. Preceding this, a very productive collaboration in another area – the emerging crisis of HIV/AIDS – built a coalition of service users, researchers and clinicians which had a decisive impact on research and saved many lives. There is much to learn from this for the mental health field, where, at present, partnership between service users, caregivers, researchers and clinicians is not such a productive force. This editorial outlines the respective histories in these two areas and the lessons to be learnt for consumer involvement in the mental health field.