Are you a Nova Scotian still struggling with symptoms three months (or longer) after testing positive for COVID-19?
You could have long COVID.
The condition includes new, returning, or ongoing symptoms ranging from brain fog and extreme fatigue to headaches, sleep problems, mood changes, and cardiac issues. While there are more than 200 symptoms, a list of the most common ones can be found here.
In Nova Scotia (and many other jurisdictions), patients are considered to have long COVID if they have common, persistent symptoms and at least one functional impairment due to their symptoms 12 weeks or longer after an initial — or a suspected — COVID-19 diagnosis.
Starting to ring alarm bells
In some cases previously-healthy people are unable to return to work or even participate in everyday activities due to their long COVID symptoms. The Government of Canada calls it post COVID-19 condition while some sufferers refer to themselves as COVID long-haulers.
“People who know this stuff are starting to ring alarm bells that this virus is not over with us when the initial infection is over in many people,” Nova Scotia Senator Dr. Stan Kutcher told the Halifax Examiner in June.
Kutcher is calling for increased federal investments in targeted long COVID research, describing it as critical because there are many unanswered questions.
Researchers don’t yet understand the full range of long COVID symptoms, how debilitating they are, how long they persist, what impact they have on people’s ability to continue working and caring for themselves and their families, and what it could mean down the road for already overburdened health care systems.
Who tends to be more at risk?
Lingering long COVID symptoms can range from mild to severe, and in some cases they’re even debilitating.
Although anyone can suffer from long COVID, women tend to be impacted more frequently than men, as do people between the ages of 40 and 60.
According to Nova Scotia Health (NSH), current research also suggests you’re at greater risk if you have had mental health problems in the past, have an ongoing condition like heart disease or diabetes, or experienced shortness of breath while actively infected with COVID-19.
What to do if you suspect you’re a COVID long-hauler
NSH asks everyone in Nova Scotia who has had a COVID-19 infection to complete a post-COVID symptoms survey/self referral form three months (or longer) after their initial illness.
This is an important step because information shared via the survey helps connect Nova Scotia patients to appropriate supports that can help them manage symptoms.
NSH also hosts an online resource to help Nova Scotians dealing with lingering COVID-19 symptoms after they’re no longer infectious. That can be accessed here.
Because long COVID research is constantly evolving, NSH health services manager Ashley Harnish said its long COVID team conducts regular reviews of the most up-to-date research available to help inform its services to long COVID patients.
Accessing peer support
One resource that many Canadians (and Nova Scotians) living with long COVID turn to is COVID long-haulers Canada. Described as a hub for information and a support network for survivors, parents and caregivers “to find viable information, resources, and answers,” the group was started in 2020 by Oakville, Ont. resident and COVID longhauler Susie Goulding.
“Long COVID is a very bizarre disease and can have significant and debilitating effects on daily life. Many survivors who were initially infected at the start of the pandemic, Jan-March 2020, are still experiencing on-going and changing symptoms,” the non-profit’s website states.
The organization also operates a Facebook group that currently has more than 17,300 members (and grows daily). That online space provides a forum for COVID longhaulers to discuss symptoms, share setbacks and victories, and learn from and support each other.
While they aren’t as large as the primary national Facebook group, COVID long-haulers Canada also offers provincial/regional online community support groups. This includes one specific to Atlantic Canadians that can be found here.
Other COVID-19 resources
While not specifically targeted to long COVID patients, the following are reputable resources that provide COVID-19 information about immune science and testing, modelling, vaccines, and other related topics that may include information about long-COVID:
- The Government of Canada’s COVID-19 Immunity Task Force
- CanCOVID, a network of Canadian researchers, academics, patient partners and others. It offers expert public panel discussions and many COVID-19 related resources and shares research
- CoVaRR-Net (Coronavirus Variants Rapid Response Network). A network of interdisciplinary researchers from institutions across the country created to assist in the Government of Canada’s overall strategy to address the potential threat of emerging SARS-CoV-2 variants.
- COVID-19 Wastewater Surveillance Dashboard, maintained by the federal government, the dashboard provides trend data about COVID-19 levels in the sewage of communities and settings across Canada.
- COVID-19 Resources Canada a group of Canadian researchers, clinicians and community members that provide information and expertise on the pandemic including kitchen table discussions
This page will be regularly updated and suggestions for additional resources are encouraged and can be sent to this email.