Canadian Collaborative Conference on ME - Nothing About Us Without Us

Myalgic Encephalomyelitis (ME) is a chronic illness affecting energy production, the immune system, cognition and sleep. It severely impacts quality of life, with 75% of patients unable to work and 25% mostly confined to their homes or beds. Despite affecting millions globally, there are no specific tests or cures for ME, and research is significantly underfunded. The COVID-19 pandemic has increased urgency, since half of the Long COVID patients now meet the criteria for ME. The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network was established in 2019 to advance ME research. Recently funded for another five years, ICanCME proposes a patient-driven conference titled "Nothing About Us Without Us," to address key issues in ME research by bringing together patients, researchers, clinicians, and other stakeholders. This conference will facilitate collaboration, update attendees on the latest ME research, and ensure that patient perspectives are central to the research agenda. Posters from ICanCME Stars of Tomorrow will also encourage students to participate and learn within the conference, fostering the next generation of ME researchers. The virtual conference, planned for Spring 2025, will include presentations on ME basics, current research, and big questions, alongside panels on topics like women's health, post-exertional malaise, mitochondrial dysfunction involvement, drug repurposing, and common ME comorbidities. A dedicated committee will ensure inclusive planning and promotion, addressing participant engagement, and accurate information dissemination. The conference aims to increase collaboration, enhance knowledge sharing, support early career researchers, and engage underrepresented groups, ultimately advancing ME research, improving patient care, and fostering an inclusive research environment.