P.E.I. resident with long COVID frustrated at lack of supports

COVID-19 hit Sam MacDonald hard when he contracted the illness back in February. And he's never been the same since.

"For about three weeks, almost a month I was completely unable to work," MacDonald recalls. "I would just stare off into the middle distance. I was truly just out of it and sleeping all the time."

MacDonald used up all his vacation time, taking a month off from his job as a quality assurance tester for a video game company. 

He's now back to working from home. He said the symptoms aren't as severe, but never went away.

He described a lack of energy and what has become known as long COVID "brain fog." He loses his train of thought, forgets what he wanted to say. Just stops talking.

"I will just get lost in a moment," he said. "A fog just rolls in. I have just enough energy, like just enough, to take care of myself. And that's it."

That thinking and focus issue is one of the most common symptoms associated with long COVID, or post-acute COVID-19 syndrome, as it's officially known. But there are many others, ranging from an abnormal heart rate to difficulty breathing to an ongoing lack of taste or smell.

Clinicians are still struggling to understand, diagnose and treat the condition.

MacDonald hasn't received a formal diagnosis. An appointment to see his family doctor was cancelled when the doctor himself came down with COVID-19, and MacDonald is still waiting to get back in.

He went to the emergency room once seeking a diagnosis, then turned around and left.

"There are people coughing around you and it's going to be, like, a 10-plus hour wait," he said.

He'd already used up all his vacation time, and the fact that he couldn't afford to get sick again made the decision for him. 

"I had to leave. I couldn't be in there exposing myself to that."

Province pledged to launch 'long COVID' clinic

P.E.I.'s Department of Health said the province is "currently looking at ways that patients who may be experiencing symptoms of long COVID-19 may be identified and access treatment."

In a statement to CBC News, the province also said online information would be made available for clinicians and patients in the coming weeks.

Back on March 2, the P.E.I. legislature voted in favour of a motion calling on the province to take immediate steps to support Islanders with the condition, including establishing "a dedicated 'long COVID' clinic to diagnose, treat and support those who are experiencing 'long COVID.'"

The non-binding motion passed unanimously, with support from MLAs from all three parties including P.E.I.'s Minister of Health Ernie Hudson.

At the time, he told the legislature that health-care providers in the province would soon be provided with "the most up-to-date information about long COVID or post-acute COVID-19 condition."

It's not clear if that's the same information the province now says will be made available in the coming weeks. A spokesperson for Health P.E.I. said the province has no expertise on long COVID, lacking an infectious disease specialist. The province also does not have a code that clinicians can use during diagnosis which would help track the number of cases here.

In response to an inquiry from CBC, health officials made no mention of the possibility of a long COVID clinic for the province.

Thousands may be affected, Green MLA says

"There's absolutely no doubt that we have thousands of Islanders who could potentially experience long COVID," Green MLA Hannah Bell said this week. Bell was the sponsor of the motion.

"They also have thousands of Islanders who don't have access to a doctor. 

"So you have a series of symptoms and potential impacts for Islanders that are not clearly defined. We have a government that is not really acknowledging what those are or providing very clear guidance … and we have very limited access to frontline health workers."

This, Bell argues, is why P.E.I. should follow the lead of jurisdictions like Nova Scotia, which have developed specialized clinics or clinical teams to diagnose and treat long COVID.

'Functional impairment'

Ashley Harnish is part of a health-care team in Nova Scotia that reaches out to residents 12 weeks after a positive COVID-19 test to check for symptoms. Those checks started out as phone calls, but with a large volume of cases, the province now uses an online screening tool.

Harnish says at the 12-week mark, half of Nova Scotians who tested positive for COVID-19 reported at least one lingering symptom. One in 10 reported ongoing persistent symptoms leading to "functional impairment."

"And it's not sort of as simple as a persistent cough or brain fog. We're really learning that it's a multitude of symptoms and presentation," said Harnish.

Harnish's team includes a physician, occupational therapist, physiotherapist and clinical therapist along with a post-COVID-19 navigator "to make sure that the patients are getting the right service that they need."

1 in 10

Nova Scotia's rate of one in 10 COVID-19 sufferers reporting ongoing symptoms corresponds with research from other jurisdictions.

As of Tuesday, June 14, P.E.I. had reported 39,377 confirmed COVID-19 cases — meaning close to 4,000 Islanders could have long COVID. 

Harnish said it would be worthwhile for P.E.I. to check in with former COVID-19 patients the way Nova Scotia does.

"There's been incredible attention on the acute stage of COVID … making sure that people are okay at that acute phase. But reintroducing just a standard of practice, of checking in with people at three months — it's amazing what can come out of those conversations. You know, 'I really am having challenges and I thought it was just me.'" 

MacDonald said since his symptoms began he's had to give up his second career and his passion in life — doing comedy.

During the pandemic — before he caught COVID-19 — he had moved his comedy online, hosting trivia nights from home and producing videos to share on YouTube.

But now he says it's all he can do just to get through a regular day without the night gig. And while he's trying to keep his sense of humour, he admits he gets "snarky" when talking about how he feels P.E.I.'s health system has failed to address long COVID thus far.

Rather than offering new support services, he said the province has scaled back testing and shut down the cough and fever clinic that started during the pandemic.

"There's no supports in place," he said.