Merryn Crofts, pictured on NAAC homepage,  died in 2017 as a result of ME just days after her 21^st birthday. Merryn’s mother Clare Norton has kindly given permission for NAAC to use Merryn’s story and images in the hope that ME/CFS  will no longer be trivialised nor reduced to a psychological or psychiatric illness.

Merryn’s legacy lives on in NAAC as we reflect on the seriousness of this illness, ME/CFS. In a landmark inquest in May 2018 Merryn became only the second person in the UK to have M.E. – myalgic encephalomyelitis – listed on a death certificate. We also honour those Australian young people who have lost their lives to this devastating disease and those who are barely living with it.

There are many young people with ME/CFS in Australia today and still they suffer from a lack of early diagnosis and intervention to limit the progression of the illness. There is no objective diagnostic test nor pharmacological treatments. The pathology of ME/CFS is still unknown and there are no agreed therapeutic management strategies. These young people are stigmatised, disbelieved with very few able to get medical help to manage some of their symptoms. Our hope lies in high quality research conducted responsibly, ethically and with integrity. NAAC’s aim is to accelerate an open, honest and respectful ME/CFS research culture inclusive of consumers and community that provides an environment conducive to capacity building and the production of high quality research.

John Siddle, PR Manager, ME Association UK sensitively reported on the inquest conclusion and gave a moving account of Merryn’s battle with ME which she sadly lost. His report can be found on the ME Association UK website. https://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/