Global Long COVID Declaration

— Initiated by Patient Organizations and Advocates LIVING WITH LONG COVID All Over the World

MaskTogetherAmerica was invited by the global Long COVID patient community to support the organization of a collective declaration for Long COVID, “a vascular, chronic multisystemic condition caused by a virus that challenges medicine and public health in unprecedented ways.” If you agree with the principles presented in the Long COVID Declaration, contact us to add your name. 

The erasure of COVID-19 prompted patient organizations and advocates LIVING WITH LONG COVID and their caregivers and allies from all over the world to unite and speak up together demanding accurate representation of patients, urgent action, research, and prevention. With a long history of exposing the truth about Long COVID and supporting Long COVID patients through our educational campaign, we are grateful and honored to have the opportunities to partner with Long COVID organizations such as Winslow Santé Publique in coordinating this global effort.

It is painful for patients in the U.S. to see that our government’s Long COVID researchers coined a narrow symptom-based index in 2023, in which Long COVID is defined by a short list of symptoms instead of its multiple etiologies and phenotypes, which are essential for the development of targeted treatments and management strategies. Instead of recruiting Long COVID patients of all severities, the 11-point scoring system heavily weighs on two specific symptoms. Loss of smell or taste: 7 points. Post-exertional malaise: 6 points. If physicians are using this research index as a benchmark for diagnosis, it is likely that a majority of the population living with Long COVID is being left by the wayside, regardless of the source of the pathophysiology that leads to incurable damages of the organ systems.

It is long overdue for the world to understand how patients are overlooked, overwhelmed, and forgotten when seeking care in a stringent healthcare system that breaks a human body down into a disparate list of parts monitored by a disjointed group of specialists rather than treating the body as a complex, interconnected system. Long COVID patients are struggling to get diagnoses, and they are utterly uncared for. It is long overdue for world citizens to jointly declare that Long COVID is an umbrella term for all the onsets and relapses of chronic illnesses that follow an infection of SARS-CoV-2 and to include people that have fallen through the cracks.

Long COVID Declaration   Email the Organizers