This infographic is about:
Testing, Identification,
and Diagnosis related to Post COVID-19 Condition
(also known as long COVID)
I think I may have post COVID-19 condition (PCC), but I am not sure.
Post COVID-19 condition (also known as long COVID) usually appears within three months from an acute COVID-19 infection and lasts at least two months.
Symptoms may vary, can change or worsen over time, and significantly impact daily life, according to the World Health Organization.
Common symptoms may include:
Canadians who reported two COVID-19 infections were 1.7 times more likely to report ongoing symptoms than those with only one infection.
Facts about PCC
Although many long-term symptoms of PCC have been reported, fatigue, brain fog, and shortness of breath have been most commonly reported.
Among Canadians still having symptoms, about 70% had symptoms everyday or nearly everyday when symptoms were at their worst.
Raising awareness about PCC: what has been
done and how to know if you have PCC?
The Canadian Guidelines on Post COVID-19 Condition (CAN-PCC) Collaborative has developed guidelines on testing, identification, and diagnosis related to PCC. There are a number of recommendations to help adults make informed decisions about their health.
To see a full list of recommendations and good practice statements on testing, identification, and diagnosis related to PCC in adults, click here.
What steps can you take if you think you have PCC?
It is normal to be worried and have questions about PCC. Below are some steps you can take if you think you may have PCC.
Write down the details of your symptoms. Be specific about when they started, how often they occur, how severe they are, if anything triggered them, and how they have affected your daily life.
Monitor and track your symptoms
Talk to a healthcare provider for more help. Together you can review your symptoms and determine which tests might be right for you to help guide your care plan.
Talk to a health care provider for more help
Evidence is evolving on this topic and information about how to test, identify and diagnose PCC may change over time. Visit CAN-PCC for the most recent updates about the recommendations.
Stay informed
Here are some CAN-PCC recommendations that you may want to review and talk to your healthcare provider about if you have ongoing symptoms.
If you have heart and/or lung symptoms after a COVID-19 infection, you may want to talk to a healthcare provider about the suggested tests listed below that may help identify other conditions and guide management:
Do you have heart and/or lung symptoms?
These could include shortness of breath, chest pain, and a feeling as if your heart is racing, pounding, or fluttering.
If you are dizzy and/or fatigued after a COVID-19 infection, you may want to talk to a health provider about the suggested tests and tools listed below that can help increase suspicion for PCC and guide management:
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Standard test tools to assess for functional status and quality of life
Do you feel dizzy and/or fatigued?
If your symptoms get worse after you perform ordinary physical, mental, emotional or social activities, you may want to talk to a healthcare provider about completing the suggested questionnaire listed below to screen for post-exertional malaise (PEM). This is also known as post-exertional symptom exacerbation (PESE). Completing this questionnaire can help increase suspicion for PCC.
Do your symptoms become worse after doing physical, mental, emotional or social activities?
To see the full list of recommendations and good practice statements on testing, identification, and diagnosis related to PCC in adults, click here.
When talking about PCC symptoms with a healthcare provider, here are some important questions to think about:
These questions can guide a good conversation with your healthcare provider and help you work together to create a complete care plan to address your symptoms.
Tips from people with lived PCC experience to help you prepare for a visit with a healthcare provider
Write down your symptoms. Be specific about when they started, how frequent and severe they are, and how they have affected your daily life.
Bring your symptom list to your appointment to discuss with your healthcare provider. The more information that you can give to your healthcare provider, the better.
Check how long your appointment will be to know how much time you will have with your healthcare provider.
Ask your healthcare provider if they are aware of PCC.
Share and discuss the CAN-PCC recommendations with your healthcare provider.
Seeking support from a healthcare provider
Listen to Lucia who is seeking support from a healthcare provider about testing, identification, and diagnosis related to PCC
Lucia: Thanks for seeing me today.
Doctor: Of course. So, what brings you in today?
Lucia: Since my last COVID infection, I have been tracking my symptoms. I have had pain and shortness of breath for over three months. I thought I would get better but I have not. I think my symptoms are connected to long COVID. I found out recently that McMaster University and Cochrane Canada made recommendations about diagnosis and testing for people who may have long COVID. I have a copy with me.
Doctor: Let me take a look and then we can discuss them together. I would like to review the most recent recommendations because I know that research on this topic is ongoing and the recommendations may have been updated.
The guidelines currently recommend a range of diagnostic tests that we may want to perform to rule out other conditions and confirm the presence of long COVID. These tests may include blood tests, imaging studies, and other relevant investigations based on symptoms. I am happy to talk about some of the recommended tests based on the symptoms you are having.
The guidelines also talk about the importance of early detection and intervention, which can significantly improve your recovery outcomes. It is great that you came in today.
Listen to Lucia talk to her partner Thomas about her appointment today
Thomas: How did your appointment go today?
Lucia: It went well. I opened up about my symptoms and shared some information about the guidelines I found online. The doctor listened and made me feel validated. It felt good to be heard. We are going to work together to monitor my symptoms.
They said to stay informed about any changes to the guidelines because they may be updated if there is new research that becomes available.
Thomas: I am so glad that they were able to help.
It is challenging for doctors to tell PCC apart from other similar conditions. Diagnosing PCC is difficult.
Some people might not understand what you are going through. Your experiences and concerns are important.
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Some of my friends and family don’t believe that I have symptoms related to long COVID because you can’t always see them. It’s hard to explain but I can feel them and they have affected my daily life.
— Person with lived PCC experience
My partner has symptoms of long COVID. I want to help, but I don’t know how. It’s frustrating not being able to see or understand what they’re going through. I just wish I could help them.
— Partner of a person with lived PCC experience
Hear from others' experiences
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Don't get mad at yourself for not being able to do things. Sometimes you gotta take it by the minute. Sometimes you [gotta take it] by the hour. But don't get mad at yourself. It's not your fault.
— Person with lived PCC experience
I think it’s so important for people to join support groups because it's such an alienating experience that you could be not believed by your closest family and loved ones. For your peace of mind, for your mental health, you need support. And so that's what I think support groups are really important for.
— Person with lived PCC experience
Tips on self-care from those with lived PCC experience
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Insights from others with lived PCC experience
“I think just listening is key.”
– Person with lived PCC experience
Ways to support a loved one experiencing symptoms of PCC
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Be patient and present
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Offer your help and support (e.g., offer to help with everyday tasks that might tire them out, like cooking, cleaning, shopping, caring for children, or driving to medical appointments)
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Make space for them to talk about how they are feeling, and listen without judgement
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Reach out and ask how to plan events that are more accessible to them
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Understand that PCC symptoms fluctuate and are unpredictable, and they may have to cancel plans at last minute
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Share trusted and credible information (e.g., health authority websites, CAN-PCC, World Health Organization)
Visit the other guideline topics to learn more about:
