By Times Chronicle Staff

People living with long COVID are being recruited as “citizen scientists” to help solve this puzzling illness.

Provincial health agencies and researchers are asking COVID “long haulers” in the Okanagan-Similkameen to share their experiences about the disease in the hope that answers will be found.

The University of BC Faculty of Medicine, one of the partners in this research, points to the latest federal government survey that shows more than four million COVID cases, and nearly 15 per cent of adults with confirmed cases are believed to be long COVID sufferers.

The Long COVID Patient Experience Project connects long haulers and health scientists so they can learn together. The information will help guide research into long COVID – a group of symptoms that linger for at least three months after initial infection. One of the project goals is to enhance patient care and support.

“Many people are living with long COVID and there are many questions about how best to help them recover,” said Dr. Linda Li, a professor at the University of BC and co-lead for the project.

“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.”

Li said there are limited avenues to collect information from people living with long COVID and analyze it to guide understanding and management.

The website patientscientist.ca is the only one of its kind to date in Canada, according to UBC. This is where people can take the survey.

“Anyone who is curious about science and wants to share their experience to help themselves and others can be a citizen scientist,” Li said.

Okanagan-Similkameen residents and other Canadians who are 19 years of age or older and living with long COVID are eligible to participate. By completing a survey, they can anonymously provide as much information as they want and compare their symptoms with others. All information is kept confidential and safe. 

Many people live with symptoms that affect what they do in life. A recent federal government survey found that 14.8 per cent of adults with a confirmed or suspected infection experienced longer-term symptoms. 

Almost half (47.3 per cent) experienced symptoms for a year or longer, and 21.3 per cent said their symptoms often or always limited their daily activities. 

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