1/I felt sick with COVID like symptoms starting mid-March. I’m much better now, but still have odd lingering symptoms, specifically lung capacity related ones. Joined a support slack group to get answers and support from, which has been super valuable.
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2/A group of us from the support group were motivated to create a patient-centric survey with questions that we were not getting answers on from medical staff or media reports, to compare and contrast with each other.
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3/ We conducted the analysis & created the report for the support group but decided to share more broadly. While it is important to note that this data has sampling bias at play, there are some interesting findings, that we believe deserve attention & further in-depth research.
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4/ Some of the analysis/follow-up, that I (personally) would love to see more attention on and investigated further are: a. Nasal Swab Testing accuracy and the importance of the timing of testing
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5/ b. Symptoms like dizziness and brain fog, that are potentially neurological, are super high in this group, but there is not enough information on.
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6/ c.The long-lasting fatigue and major decline in physical activity with many of these patients are very concerning. d. Medical & public health groups' responses to these patients with prolonged symptoms and recovery e. The Stigmas and mental health issues facing these patients
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7/ Again, while there is selection bias at play here, and not clear how prevalent the longer recovery times are (we targeted folks with longer symptom duration), I hope this work is valuable and is used as a jumping start for other research on long term effects of COVID-19.
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8/ I’m in awe of the team of volunteers, who put in significant effort and time into this while balancing other life priorities, all while dealing with symptoms, who I worked with to get this done:
@ahandvanish@herlifeinpixels@LisaAMcCorkell@AthenaAkrami, and several others!Show this thread -
9/ If you are dealing with longer symptoms, I recommend you check out, and join the support group! https://www.wearebodypolitic.com/covid19
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10/ We also wrote up an executive summary for a quick overview of the work and analysishttps://bit.ly/bp-covid-survey-summary-pdf …
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