Oakville COVID long-hauler hopes survey will prompt action for research and rehab funding


COVID Long-Haulers Support Group Canada, founded by Oakville’s Susie Goulding, recently participated in the “largest publicly available survey” to date of people living with debilitating coronavirus after-effects.

Among the 1,000 COVID-19 long-haulers surveyed, it was found that brain fog, or cognitive impairment, was among the top reported symptoms, along with fatigue and shortness of breath. Other common symptoms included headaches, dizziness and anxiety, with almost 50 per cent of participants having experienced lingering symptoms for 11 months or longer.

“It is our hope that the data collected from this survey will highlight the implications of Long COVID on brain health,” said Goulding, who contracted COVID-19 more than a year ago and is still not symptom-free. “Creating awareness through lived experiences and patient collaboration will magnify the urgency to act on funding for research and rehabilitation of long-haulers.”

The survey was a partnership between Viral Neuro Exploration (VINEx), Neurological Health Charities Canada and Goulding’s support group, to build awareness and increase funding for research and care for this group, stated a press release issued June 3.

“We must make the study of viral impacts on the brain a priority, beginning with COVID-19 survivors who need answers,” said VINEx global director Inez Jabalpurwala. “One or more clinical trials of sufficient scale, with patients followed over time, would generate data needed to better understand Long COVID and the neurological and psychological consequences of this infection. What we learn from more research on Long COVID will also accelerate our understanding of how viruses and future pandemics may affect brain health, including as possible triggers for neurodegenerative diseases.”

It is estimated that 25 to 35 per cent of COVID-19 patients are experiencing the long-term effects of the virus. The COVID-19 count in Canada as of June 2 is 1,383,214, which means that anywhere from 345,803 to 484,125 people may have been or are currently living with Long COVID in this country, according to VINEx.

The survey underlines earlier observations that the virus can cause neurological damage, which persists months after the initial infection, said Neurological Health Charities Canada manager Deanna Groetzinger.

“It clearly indicates that Canada needs action on brain health in COVID and post-COVID contexts,” said Groetzinger.

Detailed findings from the survey are “forthcoming” and will be available on the websites of the partnering organizations.

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