Have you had COVID-19 and are experiencing brain fog, fatigue, breathlessness, headaches, ringing in the ears, and loss of taste and smell?
If so, you should consider participating in a pioneering new University of BC citizen science study of long-haul COVID.
Dubbed the Long COVID Patient Experience Project, the aim is to connect long haulers and health practitioners to guide research into long COVID and improve patient care and support.
An estimated 1.4 million Canadian adults have long COVID, a group of symptoms that lingers for at least three months after initial infection.
“In BC, we have seen over 3500 people in our Post-COVID Recovery Clinics, of which just over 500 were from the clinic located on Vancouver Island,” says Dr. Karen Tran, a physician and researcher with the Post COVID Interdisciplinary Clinical Care Network and also one of the project leads. “Globally, there has been a lot of research focused on trying to understand Long COVID causes, symptoms and treatment, but more needs to be done, particularly in terms of treatment.”
People living with symptoms of long COVID on Vancouver Island are being recruited as citizen scientists to help solve the puzzling illness, and the project is unique in Canada.
“The purpose of the Citizen Science project is to learn from people with lived experiences of long COVID about their symptoms, how it affects their everyday lives, and what they want to know about long COVID and what they want researchers to study,” says Dr. Linda Li, another lead researcher.
A recent federal government survey found that 14.8 percent of adults with a confirmed or suspected infection experienced longer-term symptoms. Almost half experienced symptoms for a year or longer, and 21.3 percent said their symptoms often or always limited their daily activities.
Some people may have long COVID symptoms without knowing it. Others may be uncertain whether their symptoms are typical of others who are also living with long COVID. To date, there have been limited ways of collecting and analyzing information from people living with the symptoms.
People can participate in the project without leaving their homes. You just need to be 19 years old, have computer access and simply log onto patientscientist.ca.
There are two questionnaires on the website: the “Burden of Pain Survey” and the “Long COVID Survey.” Participation in this citizen science project is anonymous, and the information is kept confidential.
Citizen science is a way of enlisting people who want to help answer scientific questions.
“Anyone who is curious about science and wants to share their experience to help themselves and others can be a citizen scientist,” Dr. Li says. “By sharing information, they help scientists ask better questions and get better answers.”