Read on Twitter
After multiple relapses, I joined a #COVID19 support group -it saved my sanity & soul. There was a survey underway to aggregate experiences. I joined the effort and here& #39;s our 50p report on data from 640 participants.
Help us make it heard!
A thread #heading=h.kbrzb4ufngpu">https://docs.google.com/document/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk/edit #heading=h.kbrzb4ufngpu">https://docs.google.com/document/...
Help us make it heard!
A thread #heading=h.kbrzb4ufngpu">https://docs.google.com/document/d/1KmLkOArlJem-PArnBMbSp-S_E3OozD47UzvRG4qM5Yk/edit #heading=h.kbrzb4ufngpu">https://docs.google.com/document/...
1) 1 page summary
- important: we acknowledge that our survey pertains to subset of patients w prolonged recovery (it was specifically targeting those w recovery time of >2 weeks), so it cannot be representative of the whole population of patients. https://drive.google.com/file/d/1EPU9DAc6HhVUrdvjWuSRVmAkEiOagyUV/view">https://drive.google.com/file/d/1E...
- important: we acknowledge that our survey pertains to subset of patients w prolonged recovery (it was specifically targeting those w recovery time of >2 weeks), so it cannot be representative of the whole population of patients. https://drive.google.com/file/d/1EPU9DAc6HhVUrdvjWuSRVmAkEiOagyUV/view">https://drive.google.com/file/d/1E...
2) 90.6% of the respondents had not recovered at the time of survey. 60 who had recovered: average recovery time was 27d. The rest had been having sygmptoms for average of 40 days. Our “survival analysis”, shows that the chance of full recovery by day 50 is smaller than 20%.
3) 57.8% listed at least one pre-existing condition, w the most prevalent conditions being asthma & vitamin D deficiency. Our survival analysis suggests Asthma might prolong recovery time.
4) The vast majority of participants with symptoms experienced fluctuations both in the type (70% reporting) and intensity (89% reporting) of symptoms over the course of being symptomatic.
5) Symptoms are not limited to cough, fever, & shortness of breath: Other widely reported symptoms span neurological, gastrointestinal, cardiovascular, and other systems.
6) Fatigue (81.3%), chills/sweats (75.9%), body aches (73.9%), headache (72.2%), brain fog and concentration issues (68.6%), gastrointestinal issues (66.9%), trouble sleeping (66.1%), and dizziness (60.6%).
7) Despite all respondents showing COVID-19 symptoms, 47.8% were either denied testing or not tested for another reason. Of those who were tested, 46% tested positive and 54% tested negative. Comparing respondents that tested positive versus negative, two things popped out:
8) a. Average num of days between symptom onset & getting tested was 10.04 days for those who tested positive and 16.14 days for those who tested negative. Difference between the two groups is statistically significant (p-value < 0.001 based on non-parametric Mann-Whitney U-test)
9) b. only 2 of 62 symptoms (loss of smell and loss of taste) came back statistically significant, even when accounting for the point at which the respondent was tested.
10) Can this indicate that current tests are not picking up on a subset of COVID-19 patients? If so, further investigation into whether tests are accurately capturing the presence of the virus in all cases is encouraged.
11) 50% of respondents felt only somewhat supported by medical staff, & many reported receiving conflicting advice from different healthcare professionals on testing eligibility, symptom severity, & when to cease self-isolation. Patients experienced a wide range of social stigmas
12) Incredible joy working w @GinaAssaf, @ahandvanish, @herlifeinpixels, @LisaAMcCorkell, @TheCrankyQueer! It was quite an experience to pull this together while dealing w fever, fatigue, kidney pains, multiple trips to ER/doctors, brain fog ... though insomnia was on our side!
end) I joined the effort late, but had a bless working w the team. We& #39;re still live-updating the document. Please leave us comments and feedbacks how we can improve our questionnaire, analyses, and diversity of participants in future surveys! & plz help us to get the message out!
