Four years ago this week, Patient-Led Research Collaborative published the first-ever report on Long COVID: “What Does COVID-19 Recovery Actually Look Like?”. The study collected and analyzed results from 640 predominantly non-hospitalized people who were experiencing COVID-19 symptoms for an average of 40 days.
The paper and its data had a tremendous impact on Long COVID research and advocacy, and was a catalyst to the patient-led movement in this global pandemic.
For the first time, PLRC’s report communicated symptoms that are now hallmarks of the condition, particularly non-respiratory symptoms like cognitive dysfunction, gastrointestinal dysfunction, extreme fatigue, sleep dysregulation, elevated heart rate, dizziness, and headaches. We reported on problems with test accessibility and accuracy; flare-ups of dormant viruses; stigma experienced by medical providers and close relationships; and the fluctuating and relapsing nature of the illness.
The report shaped global understanding of the pandemic and heavily influenced early Long COVID research and advocacy, including:
- The first mainstream Long COVID article by Ed Yong in The Atlantic followed by NPR, The Lancet, New York Times, WIRED and many more, all citing PLRC and our report.
- PLRC presented our findings to WHO alongside other patient advocates, leading to WHO’s recognition of Long COVID in summer 2020.
- The CDC’s Long COVID guidelines,and other early federal guidelines.
- The UK Parliament’s first communication on Long COVID.
- In September 2020, the NIH Director wrote about the report, and it was later presented in NIH’s first workshop on Post-Acute Sequelae of COVID-19 and WHO’s first conference on Expanding our Understanding of Post COVID-19 Condition.
Today, Patient-Led Research Collaborative (PLRC) continues to vigorously work towards improving the lives of people with Long COVID and infection-associated chronic conditions as the COVID-19 pandemic continues to spread worldwide.We remain at the forefront of Long COVID research and advocacy to ensure all those suffering can access treatment and care.
From authoring several of the most cited research papers in the field like our comprehensive Long COVID review, to our federal advocacy efforts calling for a Moonshot for Long COVID, our team of 60+ international patient-researchers and patient-advocates fight every day for our lives and all those with and affected by infection-associated chronic conditions.
We have a long ways to go and with your help we can achieve so much more.
In solidarity,
Team PLRC
PS. Please reach out to team@patientledresearch.com if you would like to collaborate with our team.