Research Reflections: Long COVID Awareness Month

This article is authored by Kayli Jamieson. Kayli received a Special Recognition Award from the 2024 CERi Awards, and is the first to contribute to the 2024 CERi Award Blog Series. Kayli Jamieson (she/her) is a Master's student in Communication at Simon Fraser University writing a Thesis on biopolitics and Long COVID. She also has been a longhauler herself since being infected in Dec. '21. Through SFU's Faculty of Health Sciences, she has conducted research on Long COVID in British Columbia and facilitated community events for Knowledge Mobilization and to raise awareness of the condition. On the side, she engages in science communication and advocacy on her social media, summarizing peer-reviewed studies on COVID/ Long COVID. 

You probably know someone with Long COVID, or even have it yourself. Sadly, many do not realize they are living with Long COVID due to systemic lack of awareness of the condition. 1 in 9 Canadians have already experienced Long COVID, and over 400 million worldwide. Long COVID can refer to an umbrella of conditions and symptoms occurring after a COVID-19 infection that lasts for at least 3 months. It can occur in adults, children, athletes—people of all fitness levels regardless of vaccination status. With millions of patients also known as longhaulers seeking care for their new health conditions, the healthcare system is not adequately equipped. 

Patient-led Research

As a longhauler myself of over three years, I have been uniquely positioned in carrying out research assessing patient experiences with the B.C. and Canadian healthcare system and barriers to accessing Long COVID care and information. My research colleagues in SFU Health Sciences hired me on these projects over two years ago and I have been grateful to contribute my lived experience. Although I have been involved in Long COVID activism on the side, being involved in the research process has been life-changing and personally fulfilling to contribute to awareness and outputs on my own condition. Most importantly, connecting with longhaulers about our shared experiences has been valuable in ensuring our work is patient-led and centered. Also aligning with disability justice principles, we recognize that patients are the experts of their own condition–especially key with Long COVID, where many longhaulers have experienced disbelief from friends and family, societal stigma, and even medical gaslighting. 

It can still be difficult for others without Long COVID to comprehend what living with the condition is like. In addition to research, I have engaged in science communication on social media, creating infographics on COVID & Long COVID for the community to disseminate (a few are throughout this blog post). However, merely translating the science can only go so far for people to understand and empathize with this condition, and including the voices of those living with Long COVID can be far more impactful. A few examples are below:

SFU President’s Dream Colloquium 2024: Ed Yong & Long COVID 

Last Spring, my team launched the report detailing our findings from interviews and focus groups with longhaulers, unpaid caregivers, and care providers at an SFU President’s Dream Colloquium event, featuring Pulitzer prize-winning journalist Ed Yong as keynote speaker. (Yong was one of the first journalists to write about Long COVID). Our hybrid event drew in the longhauler community locally and internationally, with a panel featuring researchers and those with lived experiences. Notably our event recognized layers of protection against COVID, such as required respirators, testing negative, and a campus venue using MERV-13 air filtration. Preventing COVID transmission is a core value in carrying out intersectional community care in this ongoing pandemic, and one that longhaulers have expressed as a priority. Among these priorities also include sustained funding for holistic care and Long COVID-specific clinical services, and improving accessibility to information. A shareable summary of these activities is detailed in our Conversation Canada article.

Knowledge Mobilization through Photovoice 

Aside from traditional academic outputs, I’ve gained valuable experience in Knowledge Mobilization initiatives to involve and uplift patient voices, which can be extremely effective in real-world impact and raising awareness. One exciting example is my interdisciplinary team’s upcoming Museum of Vancouver exhibit launching this Fall. This exhibit, titled “A Day in the Life of a Longhauler”, will showcase submitted photos exemplifying the lived reality of Long COVID patients. Submissions are open Canada-wide until April 30th, and can be accessed here.

Improving healthcare for the “long haul”

Although March was Long COVID Awareness month–with 2025 marking five years of Long COVID-- this common condition deserves attention every day of the year. There is still a long way to go in continuing to raise awareness of Long COVID, along with improving access to and quality of healthcare for longhaulers. Building off our existing findings, my team is also currently working on a new national study on improving access to virtual healthcare for Long COVID, particularly among equity-deserving groups. Advising our project is a steering committee composed of patients and a caregiver, and I’m very excited for the work we will carry out together in informing policy, reducing barriers, and improving equitable healthcare access. However, beyond research settings, simple actions can be taken by any community member to prevent Long COVID and support existing longhaulers. We implore you to listen to longhaulers–because preventing Long COVID is far easier than living with it.