UBC project seeks input from COVID long-haulers

Researchers at the University of British Columbia are looking for people with long-term COVID-19 to act as “citizen scientists” in a national project.

The goal of the Long-Term COVID Patient Experience Project is to help understand the symptoms some people still experience three months or more after contracting the virus, the researchers said. These findings will inform future research directions and how best to care for those who are still suffering.

A recent federal survey found that nearly 15 percent of adults with COVID-19 experience long-term symptoms such as brain fog, fatigue, headaches, ringing in the ears, difficulty breathing and loss of taste or smell. Of those survey respondents, nearly half said they had had these symptoms for more than a year, and 20 percent said they had interfered with their daily activities.

The UBC team hopes to scale up this still-small study.They asked long-term COVID patients 19 or older to share their experiences through a crowdsourcing site called patient scientist.ca. The team says this is the only site of its kind in Canada.

The UBC team said the information people provided would be kept confidential and would allow them to compare their symptoms and experiences with others using the site. They will also analyze the responses to inform their research.

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