What is it about?

COVID-19 was thought to have a recovery period of two weeks. However, a number of young, and otherwise healthy, patients showed symptoms for many months. This prolonged disease is now known as “Long COVID.” Treatment support for Long COVID is not good enough. An online support group was created for patients to compare their short- and long-term symptoms. This led to the creation of the Patient-Led Research Collaborative, which conducted the first research on Long COVID. This article explains why we need research driven by patients to help treat long COVID. It was the first report to guide medical practitioners in understanding the diverse symptoms of long COVID and how to treat them.

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Why is it important?

Researchers sometimes have a different sense of what is important, compared to patients. Because of this, research efforts may not immediately benefit patients. But patients' experience of their illness and its symptoms are very important and useful. Involving patients in research can help address the most relevant issues and tackle them efficiently. With the increasing number of patients experiencing Long COVID, research efforts must focus on patient-specific symptom management. Monitoring its prevalence and developing effective management strategies can help minimize its impact. KEY TAKEAWAY: One possible solution to the gap between research and treatment is to treat Long COVID as a separate illness to COVID itself.

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This page is a summary of: Patient-Led Research Collaborative: embedding patients in the Long COVID narrative, PAIN Reports, January 2021, Wolters Kluwer Health,
DOI: 10.1097/pr9.0000000000000913.
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