April 4, 2022 – Patients living with long-term symptoms of COVID-19, or “long covid”, have become the catalyst for a long-needed revolution in medical research. According to a report from The Washington Post, patients experiencing these symptoms have become partners in the research process.
The report says, “They are documenting their symptoms online in real time, as well as helping to come up with questions and strategies for surveys and, eventually, to disseminate results. Think of it as the guinea pigs working alongside the scientists.”
Diana Zicklin Berrent, founder of Surivor Corps, a patient advocacy group that collaborates with researchers at Yale and other medical centers told The Post, “We bring experiential knowledge and have enough of an outsider’s perspective to see inefficiencies that people enmeshed in the system can’t see.”
Technological advances and innovations have empowered patients to share real-time data about their symptoms online, giving researchers a sort of play-by-play of their daily experiences. Finding treatments for long covid has become an increasingly urgent venture, as we slowly shift towards an endemic threat of COVID-19.
Experts are saying that in order to expand any treatment resources for people suffering from long covid “requires involving from the earliest phases people who have intimate knowledge of living with long covid.” This disrupts the traditional top-down approach to this kind of research, where trials are designed by researchers and the patients are required to play by the rules of the trial. This level of research requires the input of the patients that are participating in the study.
The methods of the research process have changed so much with long covid patients that some patients are even included as co-authors of a study on tremors among people with long covid. Liza Fisher, a patient who has been experiencing debilitating tremors since she was hospitalized in 2020 with COVID-19, is one of the co-authors of the tremors study.
She’s been on an 18-month medical journey hoping to find a treatment for her current condition and is now witnessing a medical revolution. She told The Post “I came to terms with being a guinea pig when I was in hospital. It was a joke, and I came to realize it was not an actual joke. The way I get trhough it is: this will help others. … I don’t think this is just trending; this is transforming.”