Long COVID sufferers in Kamloops, Okanagan can take part in research program

Almost 15% of Canadians infected with COVID-19 had, or continue to have, symptoms of long COVID that can last three months or more after infection.

Now, a study co-led by UBC professor Dr. Linda Li is asking people who have experienced long COVID to fill out a questionnaire about the ailment and become “citizen scientists” in the process.

“Many people are living with long COVID and there are many questions about how best to help them recover,” Li said in a news release. “People can feel overwhelmed and isolated. They may be uncertain as to whether their symptoms are typical of others who are also living with long COVID. In addition, there are limited avenues to collect information from people living with long COVID and analyze it to guide understanding and inform potential healthcare management.”

Not a lot is known about the ailment or how to treat it so the Long COVID Patient Experience Project wants to draw on the knowledge of those who understand it best – those who are experiencing long COVID – and connect them to scientists to learn more about the ailment together.

The information will be kept confidential but will help scientists “ask better questions and get better answers,” the news release says.

READ MORE: Hundreds suffering from long-COVID in Interior Health may get clinic closer to home

As citizen scientists, participants can access results of the survey that will be updated regularly so they can compare their symptoms to what others are experiencing.

They must be 19 years or older and have suffered symptoms for at least three months after contracting COVID.

Symptoms may include brain fog, fatigue, breathlessness, headaches, ringing in the ears, and loss of taste and smell, among others.

A federal study completed in August found 14.8% of adults with a confirmed or suspected COVID infection experienced longer-term symptoms. Almost half (47.3%) experienced symptoms for a year or longer, and 21.3% said their symptoms often or always limited their daily activities.

The website was developed with help from long-COVID sufferers to make it user friendly for people who suffer from things like fatigue and brain fog, the news release says.

This is the second phase of a project funded by the B.C. SUPPORT Unit. The first phase, which is included on the PatientScientist website, here, studied the impact of pain.

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