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It’s been eight months since Doug Cochrane tested positive for COVID-19. These days, the 55-year-old from Hacketts Cove, N.S. said he feels more like 75.
Cochrane finds it challenging to talk for longer than 10 minutes, and his voice is raspy when he does. The professional genealogist who’s worked on projects for Warner Brothers, major TV shows, and law firms now finds it difficult to remember three items on a list. He regularly experiences dizziness, extreme fatigue, and muscle pains that are particularly intense in his hands and feet.
“Sometimes I get out of bed and my feet are so sore I can’t stand on them to use the washroom or to let the dogs out. I just can’t walk,” Cochrane said in an interview late last week. “I don’t want to sound maudlin or anything like that, but sometimes I feel like I’m feeling what the end of life feels like, some days it’s just really that bad, not mentally but physically. It’s not a good feeling.”
Cochrane and his wife Lisa, 53, are among an unknown but growing number of so-called post COVID long haulers, people experiencing an array of mild to significant health challenges months after being infected with SARS-CoV-2.
They’re calling on the province to do more to help people who continue to struggle months after being infected.
“I’d like the Premier and Doctor Strang to understand that they’ve done an admirable job doing what they can do. However, they need to take a step farther and they need to look at long haulers,” Lisa said. “They need to acknowledge us. They need to make sure that we have access to treatment or access to rehabilitation.”
Her husband’s COVID-19 battle saw him spend two weeks in hospital at the end of March/early April, including two days in the ICU. She recalls how he was too weak to call her or to even send a text message while hospitalized, forcing her to rely on phone updates from doctors and nurses.
“I remember (one day) when I said, ‘Am I going to lose my husband to this, because he’s getting worse instead of getting better,’” Lisa said.
“Overall, it was probably one of the scariest, worst experiences that we’ve ever gone through as a couple.”
Although she was tested at the same time, was also sick, and continues to experience lingering symptoms, Lisa’s COVID-19 test was negative. Their family doctor is certain she had the virus. But it’s believed she either received a false negative or was too early or further along in her symptoms to test positive.
Regardless, both she and Doug are experiencing symptoms to this day.
“The fatigue is huge. The fatigue is really hard to explain. You get out of bed, you have a million intentions. You’re going to do all these things and you can’t get past making coffee,” Lisa said.
Once an avid reader who’d devour a Stephen King novel in two days, the stack of new books she’s keen to read remain unopened by her night table. And as much as she wants to get started on Christmas preparations, she said the idea of sorting through boxes is “insurmountable.”
“Our goal now is every day we say, OK, I’m going to get one thing accomplished,” she said. “If we push ourselves too hard and do too much in a day, then we’re back to square one and we’re not getting out of our PJs…It’s really life altering.”
In Nova Scotia, once patients are deemed recovered from COVID-19 infection, they’re no longer monitored.
“If there are outstanding health issues related to COVID-19 infection, clients would continue to be managed by their regular health care provider and/or specialists as appropriate,” Nova Scotia Health spokesperson Brendan Elliott said in an email.
“I understand there is a good amount of interest dedicated to understanding the potential long term health impacts for patients who had COVID-19 but this is not information being collected by Public Health. Having said that, If the patient is/was hospitalized and in the Nova Scotia COVID-19 clinical trial, they would be followed for the purposes of the trial for one year. “
‘Huge influx’ of Nova Scotians seeking help
When the creator of an online support group for people experiencing lingering health issues from COVID-19 reached out to local Facebook groups last month, it didn’t take long for Nova Scotians to respond.
“There was a huge, huge influx from Nova Scotia,” Susie Goulding said.
“A lot of people were coming to the group and sharing their story. These were people who had COVID and are struggling.”
Fatigue, lethargy, weakness, body aches and pains, chest pain, confusion, neurological issues, brain fog, forgetfulness, headaches, respiratory distress, shortness of breath, emotional distress, and gastrointestinal issues.
These are the main — but not the only — health issues that COVID long haulers in Goulding’s support group find themselves dealing with.
“With COVID, it’s like reaching into a grab bag. You just put your hand in there and pull out a fistful of symptoms, and you’re not going to be the same as your husband or your child, everyone is so different,” Goulding said.
“That’s why it’s so difficult to treat, because everyone is different and it can be any kind of symptom. It’s very concerning.”
The Oakville, Ont. resident started the COVID Long Haulers Support Group Canada in June after struggling to find resources to help herself and other survivors. She’s since found herself bombarded by media requests and messages from people suffering and struggling with post-COVID symptoms.
Goulding, 53, is a floral designer who was active and athletic but can no longer work. She became sick in March and also tested negative but is believed to have contracted the virus. She describes the support group as a platform of shared information, polls, articles, media interviews, and moral support for anyone or any caregiver, their family, and loved ones “to find support and the strength to fight this terrible disease.”
When Goulding reached out looking for Nova Scotians via local Facebook groups just last month, her support group numbered 4,600 people. It has since swelled to include more than 10,000 from every province and territory in Canada and beyond.
“If people were to know what could potentially happen to them, they may perhaps take this virus more seriously. And if you don’t, then this could happen to you,” she said.
“And let me tell you from experience eight months into this that there is no help. You’re on your own flying solo, baby. It is a very tough thing to go through. It’s just emotionally scarring.”
The variety of symptoms makes it difficult for many long haulers to find appropriate help. Many are dismissed, or told they’re suffering from anxiety or panic disorders. Goulding said many can’t work effectively, if they can work at all.
“Not being tested on time is very problematic. It’s very important to go out and get tested right away, because if you don’t you could be left with a negative result,” she said.
“And then good luck trying to get your insurance to believe that you actually had COVID and that you’ve become a long hauler and now you have no kind of income…This is the reality for so many.”
Positive he was positive
Dartmouth resident Joe Cullen, 36, did everything right when the pandemic hit the province. He fastidiously washed his hands, wore a mask, and stayed home except for grocery runs.
When potential exposure alerts at the Portland Drive NSLC and the Braemar Drive Superstore were released in April, Cullen realized his visits fit both timeframes. He didn’t worry too much about them until he and his wife experienced severe migraines a day apart. He rarely got headaches but was completely bedridden, couldn’t breathe properly, and started coughing.
He and his wife were tested for COVID-19, but received negative results. Cullen has since come to believe he did have the virus, something he said a physician recently agreed was likely.
“Two weeks after (being sick) I felt better. My lungs kind of sucked but it was manageable…But a week after that I got hit even harder,” Cullen said. “It literally felt like someone was squeezing my lungs, sitting on my chest, my heart rate was going crazy.”
Cullen returned to work in June, but only lasted three weeks.
“Hearing all these stories, knowing I got food from Braemar, I was actually at Portland, it was too coincidental,” Cullen said.
“In the past month I can’t go through a day without sleeping at least an hour midday. I get pretty exhausted. If I talk longer than two hours, my voice is gone again, and I have joint issues I never had.”
One of his biggest concerns besides his own health is getting back to work. Cullen said while his employer has been “amazing,” he can’t keep them hanging on forever, and he doesn’t know when he’ll be better. The prospect frightens him.
“I think Nova Scotia is doing a great job for what we have. I would love it if we had more…I would like to see more looking into the long haulers for sure,” Cullen said.
“We still don’t know as much about this virus as we’d like to, but places like Italy and London are getting centres set up to help people with the chronic issues.”
He is imploring Nova Scotians to follow all public health guidelines. Now that we’ve entered the second wave he also urges everyone to practice patience. Without exception he said doctors, nurses, and orderlies at the Dartmouth General Hospital where he’s spent many hours since April have been exemplary.
He said health care professionals are working extra long hours and falling behind schedule in part because of the extra time required to change and disinfect themselves and their work stations.
“They’re trying to take care of you the best they can…These people are doing so much to make sure we regular Joes — this time literally — are going to be safe,” he said.
“I want people to have patience. I want people to know this isn’t a scam trying to put chips in your head or whatever.”
‘Resolved’ or ‘recovered’ but still suffering
Goulding said one thing she hears repeatedly from people in her online support group is frustration over describing those who are no longer contagious or in hospital as “resolved.” She believes it’s irresponsible and helps prop up conspiracy theorists who claim COVID-19 is nothing more than the flu.
“You have all the anti-maskers saying ‘Look, everyone recovered, it’s just like a flu,’” she said. “The way that the statistics are laid out by the government plays into that, and people become dismissive because everybody thinks that people just recover, it’s just about deaths and recoveries.”
The Cochranes agree. Doug said he also wants the provincial and federal governments to stop using the words “recovered” or “resolved” when speaking about those who’ve had COVID-19. He said an unknown but growing number of them are struggling and far from resolved.
“We need to get that mindset out there that people that are no longer in hospital are still ill with this in some way and require help from health care providers or the government,” Doug said.
“The government’s got to stop saying we’re resolved when we’re not…It’s a falsehood. It’s a numbers game. It just has to look good on paper.”
His wife agreed, asking why federal money couldn’t be put towards follow-up for the province’s COVID long haulers. She said they’re not trying to paint anyone in a bad light, but believe the province needs to be called out on its failure to act and help people like them.
“Where did that federal money go? I mean, we have a provincial government that’s not in session. We’re the only one in Canada that’s not in session and things are not getting done and accountability is not there,” Lisa said.
“You can’t tell me that somebody can’t pull together a few hundred grand to staff an office and have access to a few specialists to follow up with people. I think that should be part and parcel and I think that the health minister really needs to get on that.”
Far more questions than answers
One Nova Scotia mother who spoke with the Halifax Examiner on condition of anonymity is worried about her family’s future.
The woman, her husband, and teenager all contracted and tested positive for the virus early this spring and didn’t want their names made public at this time. Although their teenager is fine, both parents are still struggling with health issues they didn’t have before contracting COVID-19.
The mother said she fears repercussions from her insurance and future employment prospects if she’s on record describing just how COVID-19 continues to impact her life.
“Are people going to wonder should I hire this person because they’re exhausted all the time or what have you? I think about it all the time,” she said.
“I’m scared of what I say to other people about the lasting side effects because am I a risk to companies? Am I risking my own job? Am I risking all kinds of things? It’s nerve wracking.”
She’s also struggling with guilt, fearing that she’s not experiencing post-COVID issues but simply exhaustion due to the pandemic and everything related to it.
“You start questioning yourself and wondering what’s truly going on,” she said.
Although she supports calls for more help, recognition, and follow-up for COVID long haulers, she’s not sure she’d actively participate.
“It’s almost like the Scarlet Letter, right? You get this big stamp on your back. That’s what I think of. It’s absolutely exhausting and I don’t talk about it a lot,” she said.
“And I keep wondering how will this affect my teenager at 20, 30, 40? Who knows. That’s the thing. We don’t know. There are far more questions than there are answers.”
National study incorporating long haulers
Dr. Angela Cheung, a Professor of Medicine at the University of Toronto, is one of many Canadian researchers working on COVID-19 related projects.
She’s the co-lead of the Canadian COVID-19 Prospective Cohort Study (CANCOV), which is working with the Canadian COVID Immunity Task Force and the Canadian Institutes of Health Research (CIHR). They have 200 participants thus far, but are aiming to recruit 2,000 patients and 500 caregivers from across Canada.
“There are many goals in this study. I think the ultimate goal is that we can learn things that will help this population, because there are a large number of clinicians in the investigative team,” Cheung said.
“So all of us, whether we’re scientists or clinicians or researchers, we really would like to see if we can help this group recover faster and recover with the minimal residual effects.”
Researchers will collect data up to one year after patients are released from hospital. Their findings will enable them to identify who’s at increased risk for severe symptoms and long-term health effects. It will also help inform large-scale public health planning, clinical care, and ongoing resources needed to combat the virus.
“Some people are totally well in a month or so and some people are six months out and they still have symptoms. I think there is fairly wide heterogeneity in terms of how people do,” Cheung said.
They’re looking at genetics, biomarkers, antibodies, and other factors to determine why some people recover quickly while others are still struggling six months after contracting the virus.
“That’s why we want people to take care (wear masks, physical distancing). We can’t tell who’s going to have it mild and who’s going to get so sick they end up in the ICU,” Cheung said.
“I would say that a large percentage who end up in the ICU don’t come out, they don’t survive. I can’t tell you who is going to be that person.”
The study is recruiting three cohorts. They include those with COVID-19 who aren’t hospitalized, those who were hospitalized but not admitted into the ICU, and those who required ICU care. They’ll follow the patients at baseline, after seven days, one month, three and six months, and then 12 months post-COVID-19 diagnosis.
She said research into other viral illnesses does show it’s common to have a residual cough as a lingering symptom, adding that in some cases those requiring ICU care and ventilation will have a longer recovery that may not be solely attributable to the virus.
Cheung said the team was approached by many long hauler patients, leading them to add another arm to their study. Their long hauler piece will involve running antibody tests on these patients.
“We find that many (long haulers) either were not tested initially because there were not enough tests or they tested negative because it was really past the window for testing,” Cheung explained.
Nova Scotians interested in participating in the national CANCOV study can get more information by calling 1-866-6-CANCOV, emailing cancov@uhn.ca or visiting their website.
“The team is very sympathetic to what patients are going through, and I would say it’s not just patients. It’s caregivers as well, their families who are looking after them,” she said.
“It is a stressful time in general for everyone in the community, but those who have actually had COVID we hear all sorts of concerns and worries…How is it going to affect them longer term and how is that going to affect their family and their livelihood and other things as well.”
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Thank you!
Very important article.