AbstractTo introduce the perspective of patients who have PASC with vibrations and tremors as a prominent component, we leveraged the efforts by Survivor Corps, a grassroots COVID-19 patient advocacy group, to gather information from people in their Facebook group suffering from vibrations and tremors. Survivor Corps collected 140 emails and 450 Facebook comments from members. From the emails, we identified 22 themes and 7 broader domains based on common coding techniques for qualitative data and the constant comparative method of qualitative data analysis. Facebook comments were analyzed using Word Clouds to visualize frequency of terms. The respondents’ emails reflected 7 domains that formed the basis of characterizing their experience with vibrations and tremors. These domains were: (1) symptom experience, description, and anatomic location; (2) initial symptom onset; (3) symptom timing; (4) symptom triggers or alleviators; (5) change from baseline health status; (6) experience with medical establishment; and (7) impact on people’s lives and livelihood. There were 22 themes total, each corresponding to one of the broader domains. The Facebook comments Word Cloud revealed that the 10 most common words used in comments were: tremors (64), covid (55), pain (51), vibrations (43), months (36), burning (29), feet (24), hands (22), legs (21), back (20). Overall, these patient narratives described intense suffering, and there is still no diagnosis or treatment available.
Stories as Gift: Patient Narratives and the Development of Empathy
