Communication between Long COVID patients with very good results in the new disease visibility

Abstract

Introduction: Persistent COVID-19, officially defined by the World Health Organization (WHO) at the end of 2021, is a condition that started to affect individuals from May 2020, leading to the formation of collectives seeking explanations for their ongoing symptoms. Methodology: These collectives collaborated with the Spanish Society of General Practitioners and Family Medicine (SEMG) in creating educational materials and participating in a national survey to better understand the disease. Results: The recognition of persistent COVID-19 was significantly enhanced by the media exposure of the affected individuals and the echo generated on social networks, increasing the news impact and reaching a wider range of social actors. Discussion: The critical role of the media as a loudspeaker for the patients' voices is analyzed, facilitating engagement with the medical and scientific community, as well as the general society, advocating for recognition, research, and proper treatment of the condition. Conclusions: The struggle for the recognition of persistent COVID-19 underscores the importance of collaboration among patients, medical professionals, and the media to raise awareness and mobilize resources towards understanding and managing this relatively unknown condition.