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Trusted Resources for Patients, Families and Healthcare Professionals

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This list of resources was co-developed by Long COVID patients and parents, researchers and doctors in the Long COVID Web network. We have divided this list into five parts:

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  1. Information for patients and parents of patients to take to their doctors about Long COVID.

  2. Information designed for healthcare professionals.

  3. Where to get support and help – including clinics and other resources.

  4. Other resources – including reading materials, news and media stories.

  5. Some resources to help patients and others get involved in research.

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 * This indicates resources for kids and parents of kids with Long COVID.

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 ! This indicates resources related to schools and education.

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 $ This indicates that you may have to pay for (not covered by provincial or territorial healthcare insurance plans, but may be covered by some insurance plans).

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When posted, this information was up to date. The LCW team will work to keep it up to date as new information comes in. Please write to us at info@longcovidweb.ca if you see an error or if you have a suggestion. We have carefully looked at what we posted to make sure it is relevant to patients, to physicians and to researchers. We have also vetted it for scientific and medical accuracy. Our team recognizes that we cannot include everything, but we did try to find the most accurate and most useful information.

 

Stay tuned! We'll share new discoveries here as they come in. And remember Long COVID Web’s goal: Canada without Long COVID. There is hope!

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Join the LCW Network – by signing up you will receive information about LCW activities, our bi-monthly newsletter, and information about other events, etc. Click the link on the top right of our home page: https://www.longcovidweb.ca

The following list includes evidence-based information about Long COVID and care for people living with Long COVID that may be useful for you and/or to take to your medical care team.​​

 

Infographic – visual summaries of LC symptoms (downloadable PDF):

https://hdl.handle.net/1805/25685

Source: The COVID-19 “Long-Hauler” Symptoms Survey Report, by Lambert, N. J. & Survivor Corps. (2020). COVID-19 “Long Hauler” Symptoms Survey Report. Indiana University School of Medicine.

 

Infographic – visual summary of LC symptoms (downloadable PDF):

http://www.phsa.ca/our-services-site/Documents/Post-COVID%20symptoms.pdf

 

Infographic – visual summary of long-term effects of COVID-19 (downloadable PDF):

https://www.nature.com/articles/s41598-021-95565-8/figures/2

Source: Lopez-Leon, S., Wegman-Ostrosky, T., Perelman, C. et al. More than 50 long-term effects of COVID-19: a systematic review and meta-analysis. Sci Rep 11, 16144 (2021). https://doi.org/10.1038/s41598-021-95565-8

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University Health Network – Long COVID Clinic Checklist of Symptoms:

Dr. Angela Cheung has shared her LC clinical checklist of symptoms used at UHN.

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Clinical information and management sheets – in English and French

https://www.inesss.qc.ca/en/covid-19/affections-post-covid-19-covid-19-longue/outil-daide-a-la-prise-en-charge-affections-post-covid-19.html

Source: The Institut national d’excellence santé et en services sociaux (INESSS), Quebec – scroll down to see English versions – this resource is designed for clinicians and includes resources on general information (June 2022), a management and support tool (June 2022), rehabilitation (June 2023), altered taste and smell (June 2022), cardiorespiratory (June 2022), neurological manifestations (June 2022), and post-exertional malaise (June 2022).

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Long COVID – What You Need to Know (January 2024) – in English and French

Source: Centre Intégré de Santé et de Services Sociaux de la Montéregie-Ouest.

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World Physiotherapy – InfoSheet on fatigue and post-exertional symptom exacerbation:  

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RECOVER Tip Sheet – Getting Ready to Talk to Your Child’s Doctor

https://studies.recovercovid.org/pdf/RECOVER-PediatricLongCOVIDTipSheet-ENG-v2.pdf

 

Long COVID Kids * (Registered Charity/International Support Group based in the UK) - Educational toolkit:

https://www.longcovidkids.org/educational-toolkit

 

Long COVID Kids * (as above) – Long COVID Information Leaflet:

https://www.longcovidkids.org/_files/ugd/eabf28_c6c4800a71f14abbad17d92e8b1eeea6.pdf

 

Long COVID Kids * (as above) – ‘Pacing Penguin’ & ‘Cautious Tortoise’ posters – practical support to help with managing energy and supporting children with Long COVID.

https://www.longcovidkids.org/_files/ugd/eabf28_c6c4800a71f14abbad17d92e8b1eeea6.pdf

https://www.longcovidkids.org/_files/ugd/eabf28_ab86649a5dcf4f67bd07a7f4f953c08b.pdf​​

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Long COVID, Episodic Disability and Labour Force Participation - Calls to Action for Government, Employers, Human Resource (HR) Professionals, Insurers and Benefit Providers (PDF).

 

University of Saskatchewan- What is Post COVID-19 Condition (Infographic) https://canpcc.ca/app/uploads/2024/12/What-is-PCC-HCP.pdf

Canadian Guidelines for Post COVID-19 Condition (CAN-PCC) *Updates will cease on March 31, 2025, unless additional funding is secured.

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The Public Health Agency of Canada (PHAC) funded Cochrane Canada and the MacMasters GRADE Centre to develop guidelines for post COVID-19 condition (PCC). The team working on the guidelines is a group of 90 people from across Canada, including researchers, health professionals, people with lived PCC experience, and health economists. As at June 2024, there are 11 good practice statements and 5 recommendations available to help guide patients, doctors, and policymakers. 

 

Following a public consultation process, recommendations will be released monthly, with the final set of 100+ recommendations to be published in the fall of 2024.

 

To view the good practice statements and recommendations in a list view: https://can-pcc.recmap.org/recommendations

 

CAN-PCC also provides a map of how the good practice statements and recommendations are relevant to different topics and populations, such as for public health, adolescents and healthcare professionals: https://can-pcc.recmap.org/grid

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A map of Canadian Recommendations for COVID-19, including Long COVID (the ‘Rec Map’), managed by the same team as above: https://covid19.recmap.org

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Canadian scientific publications on management of Long COVID:

 

Education and Support for Healthcare Professionals:

  • A new Long COVID ECHO program was launched in March 2025 providing expert-led educational sessions for healthcare professionals across Canada (registration is free; in English). This educational program is based on case-based presentations and discussion with and for healthcare professionals and is accredited by the Royal College of Physicians and Surgeons of Canada (RCPS) and the College of Family Physicians of Canada (CFPC) for CME credits.

  • A new French Long COVID ECHO program will be launched soon – information will be updated as available.

  • Long COVID The Answers also provides Mainpro+ credits (CFPC) for healthcare professionals for their podcast series on different topics related to Long COVID: https://longcovidtheanswers.com/podcast/

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Federal and Provincial Guidance for Healthcare Professionals:

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Government of Canada – Information for Health Professionals (in EN and FR):

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Government of Canada – Information for the Public (in EN and FR):  

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Other Resources:

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Ontario Health – Post-COVID-19 Condition: Guidance for Primary Care

https://www.ontariohealth.ca/sites/ontariohealth/files/2021-12/PostCovidConditionsClinicalGuidance_EN.pdf

 

British Columbia – Provincial Health Services Authority: Post COVID Recovery Care – Guidance for Healthcare Professionals

http://www.phsa.ca/health-professionals/clinical-resources/post-covid-19-care#Education/resources

 

Institut national d’excellence santé et en services sociaux (INESSS), Quebec – Information sheets on aspects of Long COVID treatment and care – in English and French:

 

Institut national d’excellence santé et en services sociaux (INESSS) – Long COVID management support and information tools for clinicians (8 pages) – in English and French:

 

Centre Intégré de Sante et des Services Sociaux de la Monteregie-Ouest: Long COVID – What You Need to Know (January 2024) – in English and French:

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Estimated health and economic impacts of Long COVID and benefits of prevention and control: Healthcare costs and effects of post-COVID-19 condition in Canada: Rafferty E, Unsal A, Kirwin E. Healthcare costs and effects of post-COVID-19 condition in Canada. Can Commun Dis Rep. 2023 Oct 1;49(10):425-432. doi:10.14745/ccdr.v49i10a03. PMID: 38481650; PMCID: PMC10936747.

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GP Leaflet: Supporting and Managing People with Long COVID in Primary Care: Long Covid SOS (UK) have worked with the Royal College of General Practitioners and the Clinical Post COVID Society to produce this leaflet offering a comprehensive and accessible guide to help family doctors recognize, diagnose, and manage treatments for Long COVID symptoms.

In this section, you will find a list of dedicated clinics and other healthcare services relevant to Long COVID (available in Canada as at the date noted), national support groups in Canada and elsewhere, information about disability support and return to work guidance, as well as other resources that you might find helpful.

 

Dedicated Long COVID Clinics (virtual and in-person) and other services in Canada:

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Publicly available information about dedicated Long COVID clinics in Canada retrieved by LCW is listed below by province/territory; there is one national service by Lifemark. Updated or new information can be sent to info@longcovidweb.ca. This list provides limited information about general clinics or services, such as rehabilitation centres, family practices or neurology clinics, which also provide care for Long COVID patients. Local healthcare professionals may have more current/accurate information about local/regional services and care. Referral forms to take to your doctor or nurse practitioner are included where available. For items listed as private pay clinics, please be sure to ask in advance if they accept insurance coverage.

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As of November 2024, no information was found regarding available LC clinics in the Territories, Saskatchewan, Manitoba or Atlantic provinces, other than in Newfoundland

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Canada-wide (as at March 2025)

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Lifemark Post COVID-19 Rehabilitation and Recovery Clinics $ (may be covered by insurance plans). Lifemark provides a national network of clinics providing a range of rehabilitation services in over 300 locations across Canada. Call 1-855-485-1344 (or click link below) to find the nearest clinic and to determine insurance coverage for services.

https://www.lifemark.ca/services/post-covid-19-rehab-recovery

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British Columbia (as at March2024)

  • BC-wide. Post-COVID Recovery Clinic (virtual care). The BC Provincial Health Services Authority provides guidance for LC on self-care and clinical care, and other resources on return to work, finances and other support. Under the clinical care tab, you will find information about how to access services – now organized as a province-wide virtual care network with a central intake/referral process: http://www.phsa.ca/health-info/post-covid-19-care-recovery#Clinical--care​

  • Breathe Well Physio $ (private clinic). Virtual video-based services for all BC residents (also available in Alberta and Saskatchewan). In-person clinics available in the West Kootenays and Okanagan. Appointments available: https://www.breathewellphysio.com/locations.html

  • Cornerstone Interdisciplinary Long COVID Rehabilitation Program $ (private clinic) – virtual videoconferencing physiotherapy services available across British Columbia; fees covered by most insurance programs: https://cornerstonephysio.com/services/covid-rehabilitation/

  • Long COVID Clinic, Bowen Island. Drs. Ric Arseneau and Jane McKay offer in-person and telehealth consultations, as well as group medical and medication visits, on Bowen Island. This clinic is dedicated for Long COVID, ME/CFS, and Fibromyalgia. A referral is required from a doctor or nurse practitioner: https://drricarseneau.ca

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Alberta (as at March 2025)​

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Saskatchewan (as at March 2025)

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Manitoba (as at March 2025) – while there are no dedicated LC clinics, there are regional symptom referral pathways. See:  

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Ontario (as at March 2025)

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Quebec (as at March 2025)
A network of Long COVID and Lyme Disease clinics, including referral centres and satellite clinics, is in the process of being implemented across Quebec coordinated by the Université de Montréal Hospital – as per a 2022 government plan. 

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Canadian and International Peer Support Groups (as at March 2025):

 Support groups for people with lived experience are listed below by national, provincial, territorial and international organizations.

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National Support Groups

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Provincial & Territorial Support Groups

 

International Support Groups

 

Government Information

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Return to Work

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Rehabilitation and Recovery

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Patient Experiences

  • Long COVID patient experience online module (Canada): qualitative research results about long COVID experiences in Canada from the Canadian Health Experiences Research Group: healthexperiences.ca/long-covid

  • Long COVID patient experience online module (UK): qualitative research results about long COVID experiences in the UK from the University of Oxford, Health Experiences Research Group: https://healthtalk.org/introduction/long-covid-in-adults/

  • The Long COVID Education and Awareness Hub: A resource hub by the St. John's Rehab Research Program at Sunnybrook, supporting those affected by long COVID, their families, caregivers, and healthcare providers: https://livingwithlongcovid.ca/

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Other Resources

Books and Reading Materials​

  • The Long COVID Survival Guide by Fiona Lowenstein, afterward by Akiko Iwasaki. Published November 2022 by The Experiment, NY. https://www.fionalowenstein.com/longcovid-survivalguide

  • Clearing the Fog by neuro-psychologist James Jackson.

  • The Long Haul by Ryan Priori-  https://www.ryantprior.com/the-long-haul

  • The Long Covid Self Help Guide—written by specialists at a Long COVID clinic offering lay explanations and self-management strategies for the different symptom clusters of long covid. (Specialists at the Post-Covid Clinic Oxford. The long covid self-help guide. Green Tree, 2022.)

  • Support for rehabilitation: self-management after COVID-19 related illness—a World Health Organization guide for patients. (World Health Organization. Support for rehabilitation: self-management after COVID-19-related illness, 2nd ed. WHO: https://www.who.int/europe/publications/i/item/WHO-EURO-2021-855-40590-59892

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Media and News Stories

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The PEM Guide (accessed June 2024). An 8-page guide for others managing fatigue and post-exertional malaise (PEM) based on personal experience of living with Long Covid, by Adriana Patino, Lead for Long Covid Canada Group:

https://docs.google.com/document/d/1BTvIScUVeHoPXLadij1HoF_r4ODo9BfhkJ-zP0sDx0Y/edit

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Health Experiences.ca: a collection of stories from a series of in-depth interviews with Canadians about their experience of a particular illness or health-related issue.

https://healthexperiences.ca/long-covid/

Opportunities to participate in clinical trials about effective treatments

 

Long Covid Studies: a web platform about current clinical trials and how to participate: https://longcovidstudies.net/

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This resource was developed by a patient with lived experience of LC to simplify access to information about clinical trials and how to enroll in relevant studies. Click on the link above to explore the current list of trials.

 

The information on this site draws from the two major clinical trials databases that include all registered Canadian trials: www.clinicaltrials.gov and https://health-products.canada.ca/ctdb-bdec/?lang=eng

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Support and information on how to be a patient advisor or co-researcher 

 

There are several resources and training programs available to help support people with lived experience getting involved with research and quality improvement projects. See for example:

 

REACH BC: An online centralized intake and matching initiative to support involvement in BC research. People in BC with or without medical conditions can sign up and be linked to research initiatives as a research participant and/or to become a patient partner in research: https://reachbc.ca

 

Patient Voices Network, BC: Patients are encouraged to join this network to support engagement in healthcare improvement initiatives and find out about learning opportunities: https://patientvoicesbc.ca/patient-partners/

 

Patient, Caregiver and Community Engagement Learning Series: The following series of seven webinars were developed to help support connections and competencies for engagement with the work of the Ontario Health Teams. It was developed by Dr. Kerry Kuluski’s research team at Trillium Health Partners in collaboration with patients, caregivers and members of the community. It is available as an online self-guided resource: https://www.instituteforbetterhealth.com/portfolio-items/patient-caregiver-and-community-engagement-learning-series/

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Ontario Health Teams: It was developed by Dr. Kerry Kuluski’s research team at Trillium Health Partners in collaboration with patients, caregivers and members of the community. It is available as an online self-guided resource: https://www.instituteforbetterhealth.com/portfolio-items/patient-caregiver-and-community-engagement-learning-series/

 

Alberta Patient and Community Engagement Research (PaCER) program: people with lived experience can obtain a certificate in patient and community engagement research through a training program run by the University of Calgary to help prepare them to be a co-researcher: https://www.ucalgary.ca/patient-community-engagement-research

 

Ontario SPOR Support Unit (OSSU) has a list of several training initiatives to support patient and researcher partnerships in research. See: https://ossu.ca/resources/resources-training/

 

Health Experiences Research Canada program, led by Dr. Susan Law, has a module on patient-researcher partnerships where people can listen to others’ experiences: https://healthexperiences.ca/patient-researcher-partnerships/

 

Virtual Nano Course on Enabling Learning Health Systems: a virtual 90-minute course for patients, researchers, and health system leaders involved in building learning health systems in Ontario. To register: https://surveys.mcmaster.ca/limesurvey/index.php/963273

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