COVID-19 'long haulers' take symptom research into own hands

A group of COVID-19 patients with prolonged symptoms created their own research group to explore why a subfaction of patients still feel sick long after contracting the virus, reports MIT Technology Review.

Gina Assaf, a technology design consultant in Washington, D.C., contracted COVID-19 in mid-March and experienced symptoms of fatigue for several months. She joined a Slack support group for hundreds of other patients with similar prolonged symptoms, many of whom call themselves "long-haulers."

After realizing these individuals were trying to find commonalities among why they were all experiencing long-term symptoms, Ms. Assaf launched a research channel within the Slack group called Patient-Led Research for COVID-19.

Six scientists and survey designers lead the 23-person research team, which released its first report in May. The report is based on insights from 640 patient responses from an online poll conducted between April 21 and May 2.

Four report findings:

1. Nearly 58 percent of respondents had at least one preexisting condition, the most common being asthma and vitamin D deficiency.

2. A majority of patients reported fluctuations in the type (70 percent) and intensity (89 percent) of their symptoms over the course of being sick.

3. About 90 percent of patients had not fully recovered at the time they took the survey. They reported an average symptom duration of 40 days, with some experiencing symptoms for five to seven weeks.

4. Among the 10 percent who had recovered, the average length of symptoms was 27 days.

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