Advancing Understanding and Care for Complex Post-Immunization Syndromes

Vaccines are pivotal in controlling the spread of infectious diseases, including COVID-19. The pandemic, however, has cast a spotlight on the need to address rare, yet significant complex chronic Adverse Events Following Immunization (AEFIs), such as Post-COVID-19 Vaccination Syndrome (PCVS). These conditions, which resemble "long COVID" or Post-Acute COVID-19 Syndrome (PACS), and include Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Postural Orthostatic Tachycardia Syndrome (POTS), present unique diagnostic and therapeutic challenges. The often elusive nature of these syndromes leads to under-diagnosis and less-than-optimal care, thus complicating effective patient management. Tackling these multifaceted challenges necessitates a concerted effort to strengthen the healthcare system's responsiveness and capacity for coordinated, multidisciplinary care, along with a deeper understanding of the specific needs and experiences of individuals affected by complex chronic AEFIs. This project aims to proactively create a multidisciplinary network encompassing researchers, clinicians, policymakers, and individuals with direct experience of complex AEFIs. Dedicated to improving the understanding and management of these syndromes, the network seeks to establish research priorities and develop an inclusive framework to enhance practices in diagnosing, reporting, treating, and researching these conditions, and their relationships to vaccination. The project's structured stakeholder engagements and network development activities, environmental scan, and international hybrid workshop represent increment steps towards a cohesive and informed strategy for managing complex AEFIs in Canada. By focusing on these rare but essential health issues, the project aims to lay the groundwork for healthcare strategies specifically designed for the unique requirements of those affected. This initiative is crucial in strengthening public confidence in vaccination programs.