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Intertwined Web

Ressources

This list of resources was put together by Long COVID patients and parents with the support of researchers and doctors in the Long COVID Web network. We have divided this list into five parts:

  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.

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

!This indicates resources related to schools and education.

$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).

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!

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 summary of LC (downloadable PDF) : 

https://www.bmj.com/content/378/bmj-2022-072117/infographic

Source: Greenhalgh T, Sivan M, Delaney B, Evans R, Milne R. Long covid – an update for primary care. BMJ 2022;378:e072117.

 

Infographic – visual summary 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

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).

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.

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

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

University Health Network – Long COVID Clinic Checklist of Symptoms:  

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

 

Note: The Long COVID Web Patient Advisory Council is working on checklists of symptoms (separate checklists for adults and children) for patients and families to help identify symptoms that will help with seeking information and professional care.

Canadian scientific publications on management of Long COVID:

Canadian Guidelines for Post COVID-19 Condition (CAN-PCC) 

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

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

 

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

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

 

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:

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:

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.

As of April 2024, no information was found regarding available LC clinics in the Territories, Saskatchewan, Manitoba or Atlantic provinces.

British Columbia (as at March2024)

Saskatchewan (as at June 2024)

Alberta (as at March2024)

Manitoba (as at April 2024) – while there are no dedicated LC clinics, there are regional symptom referral pathways. See:  

Ontario (as at March 2024)

Quebec (as at March 2024)
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. 

Canadian and International Peer Support Groups:

International support groups organized by national, provincial, territorial and international organizations are listed below. Contact information is available on their websites.

National Support Groups

Provincial & Territorial Support Groups

 

International Support Groups

 

Other Resources: General resources, Return to work, Rehabilitation, and Patient experiences:

 

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

Media and News Stories

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

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/

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

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/

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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