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Intertwined Web

Ressources

Trusted Resources for Patients and Families

The following list of resources has been compiled by Long COVID Web scientists and patient partners to help point people to evidence-based and trusted sources of information about long COVID, also known as post COVID-19 condition (PCC).

 

Items are included if the purpose and intent are consistent with LCW’s objectives, communicate evidence-based information, sources of information and organizational governance is transparent, contain no mis/dis-information, and are relevant for people living/caring for those with Long COVID – at the time that items were assessed or posted.

 

This is not intended to be a completely comprehensive or exhaustive list, and this information does not replace informed advice from healthcare providers (although some may find these resources to be helpful for their own knowledge and education). This list does include items that were felt to be most pertinent to help patients and families navigate information about this complex illness within our complex healthcare system.

 

This list will be updated periodically as new discoveries are made and new scientific evidence emerges about the cause, treatment and care for people living with long COVID. Please also see the general list of resources presented here: LINK.

 

Please write to: info@longcovidweb.ca if you would like to propose additional materials for review by our team.

Items on this list that are especially relevant for kids and parents or schools have been marked with symbols as below:

 

For kids and parents: 

 

To take to schools: 

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 your medical care team.

School Bus

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 your medical care team.

Canadian scientific publications on the management of Long COVID:

Infographic – visual summary of LC:

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:

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:

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

 

Infographic – visual summary of long-term effects of COVID-19:

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

In EN: https://www.santemonteregie.qc.ca/sites/default/files/2024/01/f1-long-covid.pdf

In FR: https://www.santemonteregie.qc.ca/sites/default/files/2024/01/fiche1-lacovid-longue.pdf

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

 

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

 

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

 

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

 

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 LC:

 

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 a set of 11 good practice statements (January 2024) and are developing a set of 6 evidence-based guidelines for healthcare professionals (to be published Spring and Summer of 2024) following a public consultation process.

  • CAN-PCC also provides a map of how the Good Practice Statements are relevant to different topics, such as for public health, adolescents and healthcare professionals: https://can-pcc.recmap.org/grid

 

Government of Canada – Information for Health Professionals:

 

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

 

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

 

What Therapists Need to Know: COVID-19 in 2024. Olivia Belknap and Erin Batali, Marriage and Family Therapist Trainees.  (needs to be reviewed) 

 

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:

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 those listed as private clinics, check to see if you have to pay.

 

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

Canada-wide/National (as at April 2024)

British Columbia (as at March2024)

Alberta (as at March2024)

Manitoba (as at April2024) – regional symptom referral pathways (not dedicated LC clinics)

Ontario (as at March2024)

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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.euro.who.int/en/health-topics/Life-stages/disability-and-reha- bilitation/publications/support-for-rehabilitation-self-management-after-covid-19-related-illness,- 2nd-ed.)

Media and News Stories

 

  • WCB article[SL1] 

  • Podcast from Marina Wasilewski – TBC – Sunnybrook

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