Compiled by Fiona Lowenstein and Betsy Ladyzhets.

How to use this source list

Read this before proceeding to the database:

While the people on this source list have consented to have their information shared publicly, please do not use the list to write about individuals without contacting them directly first. We’ve asked people on this list to provide identifying information regarding their age, race, and other demographics as well as their relationship to “Long COVID,” but we encourage journalists to confirm this information with individuals on the list before publishing it elsewhere.

To connect with individuals on the list, please use the contact information available. In some instances, people with Long COVID have detailed how quickly they expect to be able to respond to media inquiries. We ask that journalists respect these estimated time frames and understand that some Long COVID patients’ availability may change, due to the sometimes unpredictable nature of this illness. Additionally, some Long COVID patients have indicated preferred methods of communication. Whenever possible, we encourage journalists to adhere to these preferred methods of communication / interviews.

Some people on this list have decided not to share their contact information publicly. If you would like to be put in touch with an individual on the list who has not provided contact information, please email [email protected]. Please note this email address will only be checked once weekly, so responses are likely to be delayed. If you are on a tight deadline, please prioritize sources who have provided direct contact information.

Finally, please note that this list is for journalistic purposes only. The sources on this list are not available to answer medical questions or provide any other personal information.

This database has four categories of sources:

1. Patients who also identify as experts on Long COVID and/or advocates for their fellow patients.
2. Patients who don’t identify as experts, but are willing to speak to the media about their own lived experience.
3. Other experts, including scientists, clinicians, and advocates with expertise in specific areas of Long COVID research, care, and related issues.
4. Related conditions and experiences, including patient-advocates with conditions similar to Long COVID (ME/CFS, dysautonomia, etc.) and caregivers for Long COVID patients.

Navigating the database:

• Click on a source’s name to see all available information for that person.
• To toggle between views: Click the down arrow next to “Gallery,” then select one of the options.
• Use Table views to see all sources from a category in a spreadsheet-like format.
• Use Gallery views to see sources in block format, with specific key info highlighted.
• To search or sort: Hover over one of the sections, then click on the “Search” button that appears in the top right corner.
• Click the arrow icon to the left of a category title to view that category in its own page.
• Use search to look for sources who match a specific story need, such as a patient with gastro-intestinal symptoms or a patient located in Los Angeles, CA.