Participant advisory group at RECOVER hub raises awareness about Long COVID
A group of RECOVER study participants works to share feedback with researchers and help others understand what it’s like to live with Long COVID.
For the members of the ILLInet PARATROOPers—a participant advisory group at a RECOVER study hub—taking part in the group provides both the opportunity to be heard and the chance to connect with people locally who are living with Long COVID.
The PARATROOPers (which named themselves after letters included in “Participant Research Work Group”) include people living with Long COVID and participating in RECOVER’s adult observational study at ILLInet, RECOVER’s hub at the University of Illinois Chicago. The group formed shortly after Amy Pope, one of the group’s first co-chairs, was considering withdrawing from the study. Her ride to a required in-person study visit fell through, and she felt the study as a whole could be more authentic and valuable to people living with Long COVID.
However, Ms. Pope put her plans to quit the study on hold when she received a call from ILLInet’s lead principal investigator, Jerry Krishnan, MD, PhD. He asked Ms. Pope for feedback to improve RECOVER studies. The following week, she shared these thoughts over coffee—and Dr. Krishnan asked her to help him form a participant advisory group. Soon, Amy connected with a handful of other study participants, including Marta Cerda, JD, and Gregg Sewell, who became Pope’s fellow co-chairs.
“I can’t tell you how valuable it is to talk to other patients and find out about their experiences,” said Ms. Cerda, who is also a RECOVER Patient Representative and a co-chair of RECOVER’s National Community Engagement Group (NCEG). “I need to be connected to other patients [locally] so that I can do a better job advising [RECOVER] at a national level.”
The ILLInet PARATROOPers see their mission as two-fold: to ensure patient perspectives are incorporated into Long COVID research and to raise public awareness about Long COVID. The PARATROOPers partner with RECOVER researchers to help studies better reflect patient priorities and reduce barriers to taking part.
“Researchers [likely] haven’t experienced Long COVID themselves, so we’re helping to gather information they don’t know about the condition so they can study it better,” Ms. Pope said. “We have so much knowledge to share that can improve Long COVID studies.”
Ms. Cerda agreed, noting that the PARATROOPers model can be used in other studies. “We want to create a movement of centering the patient in research,” she said. “Research should involve patients from the start and throughout the process. Patient voices need to be heard, and patient voices are driving change.”
In addition to helping researchers better understand what it’s like to live with Long COVID, the PARATROOPers are focused on growing public awareness about the condition. “We need to do more than just inform researchers; we need to get the information out broadly,” said Mr. Sewell, a Long COVID patient who has participated in both RECOVER’s observational study and the RECOVER-VITAL clinical trial. “I’m passionate about helping people to understand Long COVID is real and letting other patients know they’re not alone.”
One of the primary tools that the PARATROOPers use to spread their message is a call to action they call the “PLEASE Card.” The group created this resource when Dr. Krishnan asked them to write something that explained what it felt like to live with Long COVID. The resource has been valuable to people living with this condition, helping them feel less isolated and more understood.
Ms. Pope wrote the first draft, listing items that patients want Long COVID researchers to know and remember. The card includes broad requests, such as “Please listen to your patients,” as well as specific statements, such as “Please remember to ask us what we have tried and if it made any difference to our recovery.”
“All of the things included on the card are things I heard from the group,” Ms. Pope said. “It really wrote itself.”
She read the PLEASE Card to researchers and advocates at RECOVER-Treating Long COVID’s (RECOVER-TLC's) annual workshop in 2025. Although the card is directed toward researchers, the PARATROOPers immediately saw that it could reach broader groups—including healthcare providers, caregivers, friends, family, or other members of their communities. They found that the card could also help these groups begin to understand the experience of living with Long COVID.
The PARATROOPers are now working to share the PLEASE Card nationwide. Ms. Cerda brought the cards’ message to RECOVER’s NCEG—one example of how the PARATROOPers are helping to inform RECOVER’s work as a whole. The PARATROOPers are also sharing the card with healthcare providers and researchers and distributing the message on social media and at conferences where Long COVID researchers gather, such as IDWeek.
“It’s a conscious plan—we are taking every opportunity possible to speak,” Ms. Cerda said. “We are pushing for a national movement that starts with healthcare providers and the public being better educated about Long COVID and eventually leads to legislative change [to better support those living with the condition].”