Long Covid Archive
An archive works to acquire, preserve, and make available historical records, documents, and material in any media collected under the terms of a particular mandate.
The mandate of the Long Covid Archive is to collect, preserve, and provide access to materials that document the history of Long Covid. Our collection includes a diverse range of materials—such as photographs, audio and video recordings, media stories, and other artifacts—that capture public events, launches, advocacy efforts, awareness campaigns, and related activities. Materials are organized chronologically to support research and study into the evolving history of Long Covid.
All materials in the archive were voluntarily submitted for inclusion by the organizer, founder, author, creator, or person/entity authorized to share the information, with the exception of publicly available materials published by governmental entities.
The Archive
May 20, 2020
Long Covid: The Name
“Long Covid” was first used by Dr. Elisa Perego as a Twitter hashtag on May 20, 2020 to describe her own situation and illustrate the impact of SARS-CoV-2 over a long period of time.
Within months, this patient made term was taken up by powerful actors, including the World Health Organization.
“A single tweet from a person who was not recovering from COVID-19. A single tweet very few noticed at the beginning. We have come a long way. We built a movement we hope will help change medicine.” – Elisa Perego
September 15, 2022
The Long Covid Lounge
For 3 years, @D_Bone held X (formerly Twitter) spaces for open discussions of everything Long Covid. Topics were free flowing and research information and patients experiences were shared.
We have archived all of these spaces as part of the history of Long Covid.
February 2023
Long Covid Awareness Colors
Colors for a tricolor ribbon were polled by the community to identify the colors that best represented those impacted by the illness. Tracey Thompson, a first wave Long Covid patient, designed the Long Covid awareness ribbon the community will use to represent them.
February 22, 2023
Long Covid Community Sets International Awareness Date for March 15th
On March 15, 2023 those who Long Covid has impacted will come together for the very first International Long Covid Awareness Day. This yearly observance hopes to spread information about the impacts of Long Covid around the world…
August 28, 2023
International Long Covid Awareness Letter Writing Campaign
January 18, 2024
U.S. Senate HELP Committee Hearing on Long Covid
On January 18, 2024, the U.S. Senate HELP Committee held a hearing on Long COVID that featured testimony from patients and Long COVID researchers to consider how the United States could advance treatments and improve the health of those living with the illness.
July 7, 2024
Long Covid Land Sunday Brunch
Long Covid Land Sunday Brunch launched on March 31, 2024. It is a weekly X (formerly Twitter) space hosted by @CaffeinatedTdlr. The Sunday Brunch is a space for discussing Long Covid and about centering the lived experience of people with Long Covid. Participants are invited to be kind, be sincere, be present.
An archive of the Sunday Brunch Spaces began in July 2024 and is updated weekly.
September 2024
Dealing with the Fallout
Post-COVID-19 Condition and Its Continued
Impact on Individuals and Society
Report from the Office of the Chief Science Advisor of Canada
November 1, 2024
Long Covid Connect UK
Long Covid Connect UK was launched on November 1, 2024 by two Long Covid patients from England. It is first UK based, patient-led, Long Covid website to offer resources, emotional support and essential services. The site was created out of anger and frustration at the lack of information, support and guidance from the UK government.
The planned helpline did not materialise due to a lack of volunteers coming forward from the community. However, the site is still active with many resources for LC patients including access to community support groups via social media, DWP literature to help navigate the benefits system and the latest news and scientific research on Long Covid and SARS-CoV-2.
November 24, 2024
Long Covid Land
Long Covid Land was created and is maintained by Long Covid patients committed to preserving Long Covid stories and resources.
We also provide the Long Covid Land Toolbox, a collection of resources, scientific studies and journal articles, as well as links to Long Covid associations and organizations.