Alberta COVID-19 long-haulers look for more provincial support, NDP demands task force

CALGARY -

Nearly two years after she was infected, Calgary business owner Stacey Robins is suffering from symptoms of COVID-19.

CTV News first met Robins in December 2020, when she described what her and her mother were going through, nine months after being infected at a conference in California in March 2020.

Robins is still dealing with fatigue, hand tremors, brain fog, and electric shocks in her legs. She says it’s difficult to focus for more than three hours in a day and feels more supports are needed. 

"We’re not expendable, we’re still here, we’re just disabled now," said Robins. 

Robbins was a small business owner — an artist who painted shoes. Due to her symptoms, she has had to give that up. 

"Without the ability to paint, I had to make the hard decision this year to shut down my business," she said. 

"I put everything into that business. I’ve basically been living off my savings and credit cards for 20 months."

When seeking medical attention outside her family doctor, she says she was turned away. 

"To just not be believed unfortunately that’s a thing," she said. "As a woman going to seek healthcare, that is something that happens quite often."

Alberta NDP leader Rachel Notley says the province needs to acknowledge that long-haul COVID-19 is affecting thousands of Albertans and the party would like to see the UCP government form a task force to drive research and help define the financial and legal support patients need.

"We need a more focused directed accountable regime of action to support to what we suspect amounts to around 60,000 Albertans," said Notley. 

"Folks like Stacey and her mom can’t really and shouldn’t be asked to wait two years for government to act."

Calgary business owner Stacey Robbins is suffering from symptoms of COVID-19 nealry two years after being infected.

Dr. Satish Raj at the University of Calgary’s Cumming School of Medicine is investigating how individuals suffering with long COVID-19 seem to develop problems with their autonomic nervous system.

He says he understands the frustration long-haulers may have around a lack of research about the effects. 

“From a medical community point of view, in many cases we don’t know what to do to make them better,” said Raj. 

“If you’re still having ongoing symptoms that relate to that initial infection and its been more than three months or 12 weeks, you’re in the long haul category.” 

Raj adds that many patients have sought treatment at the Calgary Autonomic Investigation and Management Clinic since the pandemic began. He hopes his research will lead to treatments for long-haul COVID-19 sufferers.

As for Robins, she’s unsure how long her effects may last. 

"I’m at 65 per cent right now," she said. "I hope to be at maybe 85 (per cent) in a year, I was 30 a year ago."

In August, Jason Weatherald, a respirologist and assistant professor at the University of Calgary said 10 per cent of people who’ve had COVID-19 have long-term symptoms and there is still a lot of unknowns, including if conditions will improve and the long-term impacts of contracting the virus.

At the time, Alberta Health Services said in a statement that "Long COVID-19’patients is not currently being tracked."

AHS added then that it was developing a process for patients to submit their side effects to a Post-COVID Task Force Response Group.

It says that there are resources for patients dealing with long term effects including: 

A symptom self-management guide to help patients recover from COVID-19;

Information on COVID-19 Recovery Clinics (accessible only with a referral from a family physician) – in Edmonton at the Kaye Edmonton Clinic and Edmonton North Primary Care Network; and in Calgary at the Peter Lougheed Centre and Rockyview General Hospital

"We’re in the process of adding ‘diagnostic coding protocols’ (the way people with long COVID are coded within hospital and primary care)," said spokesperson James Woods.

"This is currently being deployed across AHS, which will allow us to track this patient population. No timelines yet on implementation."