Thread by @herlifeinpixels

SO excited to share this analysis on COVID-19 prolonged recovery:

📑 bit.ly/bp-covid-surve…

We poured our hearts into writing this public report. As researchers, scientists and also COVID-19 survivors, we hope our findings shed some light into the complex nature of recoveries.

I believe this is the 1st ever participant-led analysis for COVID-19. We surveyed 640 patients, found patterns we have not seen reported in media. Check it out.

It's been such a joy to collaborate w/ @GinaAssaf
@ahandvanish @LisaAMcCorkell @AthenaAkrami @TheCrankyQueer & more!

Breaking down favourite findings from our report:

1/x At the time of response (Apr 21-May 2), those who said they have not recovered (90.6%) were on average on their 40th day of illness.

We also ran a survival analysis. At day 50, the probability of recovering is less than 20%.

2/7 Among the most common COVID-19 preconditions recorded, asthma was found be possibly correlated with increase in recovery time.

Surprisingly, not vitamin-D deficiency!

3/7 Comparing symptoms between pos and neg test results, we found no difference (!) EXCEPT for loss of smell and loss of taste, which was reported more frequently by those who tested pos.

We believe this implies that a subset of COVID-19 patients were not picked up by testing.

4/7 Furthermore, when compared between the two groups, we found that those who tested negative tested later by average of SIX DAYS than those who tested positive.

Personally, I was diagnosed at the ER on day 10 via chest scan, but only received a swab test on day 40 (negative).

5/7 We sorted an exhaustive list of 62 (!!) symptoms. They fall into categories other than respiratory, such as neurological, gastrointestinal, cardiovascular, and more.

70% reported new symptoms appearing at different stages of illness
89% reported experiencing them in waves

6/7 When we asked about experience with medical staff, 50% respondents said they felt somewhat supported. Dismissed symptoms and receiving different treatment between health professionals were major frustrations.

People who felt supported often reported staff offering followups.

7/7 We observed a range of systemic and internalized stigma faced by patients when we asked about their reasoning behind why they choose to share, or keep private about sickness and prolonged recovery.

Stigma can hinder patients from getting the support needed to recover.

I had a blast analyzing qualitative data and piecing together patient stories that are not unlike our own.

I'm so proud and in awe of my co-researchers. We pulled together this report with our collective COVID brains while dealing with relapses, ER visits, fatigue, insomnia. 🙏🏼

We recognize our data is biased towards patients who sought out an english-speaking, support group based in the US (wearebodypolitic.com/body-type/2020…).

We are prioritizing gender, socio-economic & racial diversity going forward, especially given our racially diverse global research team.

First & foremost, we wanted to give clarity to patients in our community.

Now we're looking to get the word out to media and spark further research. 🔥

Please help us share this report!

📃 1-Pager: bit.ly/bp-covid-surve…
📑 Full Report: bit.ly/bp-covid-surve…