Information & Links – Long COVID
The following resources and materials have been identified and reviewed by the Health Experiences Research Team. The list below is not intended to be comprehensive but includes core information for patients and professionals seeking reliable, evidence-based information on long COVID. You may find other resources from trusted sources and your healthcare professional team.
Select Resources
Long COVID Web – Trusted Resources for Patients and Families (co-developed by patients, researchers, and clinicians)
https://www.longcovidweb.ca/resources/trusted-resources-patients-families
This site features evidence-based, reliable information about long COVID, including factsheets and checklists, guidance for healthcare professionals, Canada-wide resources for getting help and support, additional reading, and information about getting involved with research.
Post COVID-19 Condition (Long COVID) – Government of Canada (English and French)
This educational resource from the Government of Canada details symptoms, risk factors, prevention, diagnosis, and treatment for post-COVID-19 condition.
Report from the Office of the Chief Science Advisor on Post-COVID-19 Condition in Canada (English and French)
This is a report by the Office of the Chief Science Advisor on Post-COVID-19 Condition in Canada.
Long-Term Effects of COVID-19 – Johns Hopkins Medicine (English)
Article by a collaboration of medical experts reviewing long-term COVID-19, what symptoms are most common and what to expect if you are affected by them.
Post-COVID-19 Condition – World Health Organization (English)
https://www.who.int/teams/health-care-readiness/post-covid-19-condition
This site provides the WHO case definition of long COVID, guidance for healthcare professionals, and links to other resources.
Select Canadian Provincial Resources
Living with Post-COVID Symptoms – BC Provincial Health Services Authority (English)
http://www.phsa.ca/health-info/post-covid-19-care-recovery
The Post COVID-19 Interdisciplinary Clinical Care Network offers research, education, and care to support patients in their recovery. This resource includes information on self-care, clinical care, and additional information to help you navigate your life post-COVID.
MyHealth, Alberta Care (English)
https://myhealth.alberta.ca/HealthTopics/After-COVID
This is a government resource providing general long COVID care instructions, list of symptoms, resources, and telephone numbers for general health, rehabilitation, and mental health support. This includes the Rehabilitation Advice Line at 1-833-379-0563.
Québec (English and French)
https://www.quebec.ca/en/health/health-issues/a-z/2019-coronavirus/long-covid#c194580
A network of Long COVID and Lyme Disease clinics, including referral centres and satellite clinics, is being implemented across the province coordinated by the Université de Montréal Hospital (as per a 2022 government plan). A list of clinics by region in Quebec is available here in English and French (scroll to section ‘Network of long-COVID clinics’).
Canadian Support Groups for People Affected by Long COVID
COVID Long-Haulers Support Group Canada (English)
https://covidlonghaulcanada.com
This organization is Canada’s largest online COVID community. It is a hub for information and a support network for survivors, parents, and caregivers.
Long COVID Canada Facebook Group (English)
http://facebook.com/groups/longcovidcanada/
This is an online Facebook Long Hauler Group dedicated to those living with long COVID/Post COVID Syndrome.
Long COVID Kids Canada (English)
https://www.facebook.com/groups/longcovidkidscanada/
This is an online advocacy and support group for parents and guardians of children recovering from COVID-19. The group offers a welcoming space for parents and guardians of children living with long COVID to connect, find peer support, share their stories, raise awareness, and participate in research.
Covid longue Québec Long Covid (French)
https://www.facebook.com/groups/covidlongueqc/
The purpose of this group is to offer support to people living with the long-term effects of COVID-19. This group is also a safe space to discuss topics of interest such as recent research and healthcare services available in Quebec.
COVID-19 Outpatient Rehabilitation Programs (English)
https://rehabcareontario.ca/47/COVID-19_Outpatient_Rehabilitation_Programs/
A list of rehabilitation programs designed to help individuals with ongoing symptoms of COVID-19. Published by the Rehabilitative Care Alliance.
International Resources
Long COVID SOS (English)
Long COVID SOS is a UK-based registered charity campaigning for research into long COVID and recognition of the importance of supporting people living with the condition.
Long COVID Kids (English)
https://www.longcovidkids.org/
Long COVID Kids (UK-based) represents, supports, and connects children and young people living with long Covid and related illnesses and the parents and caregivers that look after them.
Long Haul COVID Fighters (English)
https://www.c19recoveryawareness.com/
The mission of the Long Haul COVID Fighters (US-based) is to provide support for those whose health has been affected by COVID-19, promote public awareness and education regarding lengthy COVID recovery, and advocate for the medical, mental health, and social interests of long haul COVID survivors.
Patient Oriented Research Initiatives
Long COVID Web (English)
https://www.longcovidweb.ca/resources
Long COVID Web is a network supporting and conducting research into Post-COVID Condition (PCC) founded by researchers from the University Health Network, Toronto. There are links to various resources for patients and researchers to understand more about long COVID.
Citizen Science Canada (English)
https://patientscientist.ca/#participate
Organization that allows you to become a citizen scientist by sharing your experience of long COVID.
Long COVID in the Media
If you are interested, many news outlets have published articles and podcasts on long COVID.
- The Guardian (October 14, 2022): I was an athlete – now I’m 30 and in a wheelchair thanks to long Covid. This article presents an athlete’s experience with long COVID and illustrates how one can use graphic illustration to share patient stories.
- The New York Times (December 14, 2023): 1,374 Days – My Life with Long COVID. By Giorgia Lupi.
- CBC News (December 02, 2023): ‘What I want are recovery narratives’: CBC Radio Host Gill Deacon on life with long COVID.
- CBC News (June 23, 2023) with Drs. Fahad Razak and Angela Cheung:
- USA National Public Radio (NPR) interview with a neuro-psychologist on practical guidance (May 10, 2023):
- New York Times article (January 24, 2023). Long Covid is keeping significant numbers of people out of work, study finds. By Pam Belluck:
- Scientific article in Nature (published January 13, 2023). Long COVID: major findings, mechanisms, and recommendations. By H Davis, L McCorkell, J Moore Vogel, and E Topol.
Canadian Guidance for Healthcare Professionals
Canadian scientific publications on management of long COVID:
- Diagnosing post-COVID-19 condition (long COVID) in adults (2023):
- Assessing common and potentially modifiable symptoms of post-COVID-19 condition (long COVID) in adults (2023):
- Treating common and potentially modifiable symptoms of post-COVID-19 condition (long COVID) in adults (2023):
- Cardiovascular considerations in the management of people with suspected long COVID (2023):
Canadian Guidelines for Post-COVID Condition (CAN-PCC).
A research team based at McMaster University and funded by the Public Health Agency of Canada has published 11 good practice statements (January 2024) and are developing a set of 6 evidence-based guidelines for healthcare professionals following public consultation. The guidelines will be completed by November 2024.