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Community Long Covid Defintion
Several Long Covid organizations have worked to update the Long Covid definition. 25 groups were invited to provide their opinions before this public commenting period began. We believe this updated definition will better serve Long Covid patients and more deeply inform medical professionals of what those who have Long Covid experience. It is currently open for public feedback until March 5th midnight PST.
While we acknowledge the current definitions, we find that they do not adequately reflect the urgency of action and prevention required. Furthermore, they do not include some critical language necessary for a more complete definition of Long Covid and for patients to access appropriate medical support. We intend to submit this updated community definition to National Academies of Sciences, Engineering, and Medicine (NASEM), which provided some of the foundation for this community version, in the hopes that they address some of these concerns that the community has about their definition and others.
This effort has the potential to influence government policy, insurance coverage, and healthcare practices. Whether or not you agree with the current draft, we would greatly appreciate your time in reviewing the proposed definition and sharing your thoughts, particularly anything you believe should be added or removed.
When the finalized definition is completed it will be posted on this page.
This form is in place to get wider input from the Long Covid community before this Community Long Covid Definition is finalized in March of 2026. Please take the time to offer your valuable insights. Again, this form will be open until March 5, 2026 midnight PST. You can see this form at this link: https://docs.google.com/forms/d/e/1FAIpQLSf8TwihwFeVqveX43Em-1zurgO8FUsHN6AlrsEPB00il5YlnQ/viewform?usp=sharing&ouid=117334817315826960757