We are experiencing a mass disabling event: over 200 million people worldwide are suffering from long COVID. In Canada, one in nine people have had prolonged COVID symptoms, and this is likely an underestimate.
Occurring weeks or even months after a COVID-19 infection, this chronic, multisystem disease has led to what some have called “the shadow pandemic.” Although millions of people are facing this new disease, four years into the pandemic, patients and their caregivers continue to face challenges accessing the information and care they need.
Most Canadians have had COVID, and at least one in five have been infected more than once. These trends are troubling because data suggests that the risk of getting long COVID increases with reinfection.
Long COVID
Long COVID is a complex illness that can manifest with a range of neurological and cardiovascular symptoms, such as post-exercise malaise, heart palpitations, cognitive impairment, fatigue and approximately 200 other symptoms. Some people with long COVID, often called “long-haulers,” suffer from other understudied syndromes, such as myalgic encephalomyelitis (ME) – also known as chronic fatigue syndrome.
(Kayli Jamieson), Author provided (no reuse)
With a range of life-changing impacts, it’s no surprise that long-haul travelers also experience impacts on their mental health, financial stability and relationships with others. These experiences are further exacerbated by the fact that there is no cure for long COVID.
Over the past year, our team at Simon Fraser University has spoken with long-COVID patients, unpaid caregivers – such as family members and friends who take on caregiving roles – clinicians and researchers with long COVID to better understand patient experiences. In a new report, we have documented a number of challenges patients and their caregivers face, along with recommendations for reducing these barriers.
Holistic approaches to care
Because symptoms and experiences vary, there is no single approach to care that can support all long-haul travelers. In British Columbia, COVID recovery clinics have been instrumental in creating specialized regional spaces for COVID-related long-term care.
These clinics combine medical care, paramedical care – such as physiotherapy and occupational therapy – and patient support groups. The closure of in-person clinics as part of the transition to an online healthcare system, combined with long wait times, means some patients are having difficulty accessing these clinics.
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Long-haulers highlighted the value of specialist clinics and the need for holistic approaches encompassing allied health care to address the multifaceted impacts of long COVID on patients’ lives. Carers, in particular, have expressed the need for mental health support due to the added pressures on their ability to work, relationships and other responsibilities.
Holistic approaches are being taken by some groups such as the Clinical Post COVID Society in the UK, which brings together a “diverse multidisciplinary clinical leadership team to reflect the varied expertise needed to care for patients with long COVID”. This example can serve as a useful model for mobilizing these approaches in Canada.
Information
Access to information on long COVID remains a significant challenge. While long-haul travelers get information from healthcare providers (which can vary and be contradictory), many cannot meet with a doctor.
In British Columbia, about one in five people do not have a family doctor. As a result, many must search for information on their own, scouring websites and articles while trying to discern what to trust. This can be particularly difficult for people experiencing brain fog and fatigue, or those who are limited in time and resources due to caregiving, work, or other demands on their time.
Patients, caregivers, clinicians and researchers suggest that the federal government create a national long COVID information platform providing details on symptoms, symptom management, a database of health professionals providing care during long COVID and updates on recent research.
This could be modeled after the Post-COVID MyGuide, produced by the Post-COVID Interdisciplinary Clinical Care Network in British Columbia. And while these resources are essential to supporting long-haul carriers, they are only useful if people have access to them. Therefore, more investment is needed to raise awareness of these platforms, assess their usefulness and explore ways to adapt them for national use.
Prevention
Another key outcome for improving care is to refocus prevention efforts to reduce the risk of reinfection for long-haul travelers and future long-term COVID cases. Prevention measures may include campaigns promoting the use of respirators, regular vaccinations, increasing paid sick leave, or improving air filtration and indoor ventilation.
Preventing long COVID also involves taking these precautions in the absence of visible illness, since some early estimates suggest that 59% of transmissions occur without symptoms.
Our team put these prevention measures into practice in April when we hosted a hybrid long COVID event with Pulitzer Prize-winning journalist Ed Yong and a panel of patients, caregivers, clinicians and researchers. The event included safety measures such as mandatory masking with KN95/N95 respirators, rapid testing of participants, and MERV-13 air filters.
During and since this event, we have received many messages from long-haulers explaining how the event and the safety measures in place were meaningful to them and made them feel seen. To do this, collectively (researchers, clinicians, policymakers and the public) can take many steps to create safe spaces as a baseline for reducing transmission risks.
As we continue to grapple with the lasting aftereffects of the COVID-19 pandemic, we must recognize that many communities have been disproportionately impacted by SARS-CoV-2. To address these differential impacts, patients and caregivers are advocating for continued investments in research and patient-centered care to create initiatives that resonate and are relevant to those most impacted.
To further amplify these stories and raise awareness, our team is developing a long-form COVID photo exhibit “Day in the Life” in partnership with the Museum of Vancouver, where long-COVID patients can share their stories and photos. Activities like this are another step in making visible the experiences of people living with an invisible illness.