Lay summary
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a neurological illness, often post-viral in origin, affecting up to 25,000 people in Aotearoa New Zealand. Despite significant impacts on patients' quality of life, it has been largely overlooked in research for a variety of reasons, including medical gaslighting, misogyny and lack of understanding. The Covid-19 pandemic has shone a spotlight on ME/CFS, due to its overlap in symptoms with Long Covid, the post-acute sequalae of Covid-19. A Long Covid Registry has been established, and forms a platform for future research. We propose preparatory work to establish a ME/CFS Registry. This will involve discussions with stakeholders in Aotearoa New Zealand and a review of international ME/CFS Registries. We will build on relationships that we have established across the sector through our existing Long Covid work, including with Māori providers and communities. The work will ensure successful establishment of an ME/CFS Registry in the future.