Hope on the horizon for COVID-19 long haulers

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Ellen Durkee loses her voice if she speaks for too long. She struggles with brain fog and memory issues. She has vertigo, tinnitus, and overwhelming exhaustion that’s frustratingly coupled with insomnia.

Then there are her swollen and itchy hands and feet.

Durkee, 60, is still living with these symptoms more than a year after she contracted the virus that causes COVID-19. The Middle Stewiacke resident is one of an unknown number of Nova Scotians suffering with long-haul COVID, also referred to as post-acute COVID-19 syndrome.

“I got sick and I just never got better I think is probably the best way to describe it,” Durkee said in a recent interview.

As a growing number of Nova Scotians struggle with long-term complications from contracting the virus, the physician in charge of the Central Zone’s COVID-19 inpatient unit says there’s hope on the horizon.

“We see you, we believe you, we know you have symptoms, we know you need help,” Dr. Christy Bussey said in a recent interview.

“We’re working very hard as a group collaboratively to try and not just find the help for you, but to do it in an accessible fashion so that you do have access — no matter where you are in Nova Scotia — to the help and the supports that you need.”

Bussey, site lead of the QEII Hospitalist Medicine Service, is also part of the provincial COVID network. Her group has also been staffing the community COVID virtual care team since last November.

“We’ve been directly admitting patients to the hospital and discharging them as part of that service, and it’s been really eye-opening for me to be able to talk to patients still experiencing symptoms after they go home,” she said.

‘We have to be prepared for a higher number of these patients’

Bussey said patients are understandably confused by the term “recovered.” Although it means they’re no longer infectious, many who are still unwell and struggling question the term.

“So you’re no longer infectious, but that doesn’t mean that you’re not going to have ongoing fatigue, ongoing mobility challenges, ongoing poor oral intake or nutritional status, or ongoing general brain fog and not being able to concentrate the way that you once could,” she said.

The COVID network includes representation from across the province. While there are no statistics to suggest how many Nova Scotians are living with long-haul COVID, Bussey said efforts to establish a care model for this group of patients are ongoing.

Before the third wave, Nova Scotia’s overall COVID-19 case numbers were relatively low. Bussey said with about 10% of patients potentially at risk of developing long COVID, the increased number of cases during this third wave means far more Nova Scotians could become long haulers.

“We know we have to be prepared for a higher number of these patients needing service,” Bussey said.

The province’s COVID-19 patients are categorized into three groups.

One includes long-haul COVID patients who are still experiencing symptoms 12 weeks beyond their acute illness. That three-month mark seems to be the broadly accepted cutoff for when someone is considered to have “long COVID.”

The other two groups include patients from the time of diagnosis just up to the 12 week mark — one group in the inpatient (hospital) setting and the other in the community setting.

“Where do these people go? Do they have to wait for 12 weeks? Do they not have to wait for 12 weeks? Where does that fall? That’s where a lot of energy is being put right now, into care pathways for those patients,” Bussey said.

That could mean referring patients to Nova Scotia Health’s Integrative Chronic Care Service (ICCS) facility in Fall River, and Bussey said work is underway to determine what that might look like.

Some long-haul COVID patients have already been referred to ICCS. According to Nova Scotia Health, that facility “provides comprehensive assessments and care planning for individuals with complex chronic conditions.”

‘Something that we need to put the work into now’

Bussey said across Canada and in the US, the focus is on an integrative approach for patients with long-haul COVID. While ICCS has the level of expertise in the kind of multidisciplinary, integrative care these patients require, Bussey said it’s a relatively small clinic and additional support for that service would be required.

“We know that the clinicians there do this work for other disease processes, so we already know this approach to care works,” she said. “So how do we best resource that clinic, because if we’re talking about several hundred people now versus a dozen, it’s really going to change what’s required.”

Another piece of the puzzle is ensuring primary care providers across the province are provided with appropriate and up-to-date resource material and information to help them help their long-haul patients.

Virtual care options are also likely to be worked into the mix.

Although she acknowledges and understands the frustration and sense of abandonment many long haulers are feeling, Bussey said it’s important these patients know they’ve not been forgotten and work is underway to ensure they’re taken care of.

“This is something that we need to put the work into now so that we can support the patients the best way we can,” she said. “There’s a lot of push behind establishing this. And it’s important. It’s necessary. We absolutely have to.”

‘We need help’

Jennifer Mont, 29, has a virtual appointment with ICCS next month and an in-person appointment scheduled for August.

“My concern is for the rest of the Maritimes, because there isn’t anything besides this in Fall River,” Mont said. “It makes me sad that you have to fight so much and figure stuff out on your own.”

Although she was fastidious about following public health protocols, the Halifax resident received her surprise COVID-19 diagnosis on April 29, 2020. She was never admitted to hospital, but her symptoms were serious enough that in the first three weeks of her diagnosis, she made one trip via ambulance and another via taxi due to severe shortness of breath that was interfering with her ability to eat.

“Each time I went there they did chest x-rays and they both turned out clear,” Mont recalled. “The second time that I was there, one of the doctors said, ‘Yeah, you’re going to be in it for the long haul.’”

Mont serves as a Nova Scotia patient representative on the Canadian COVID-19 Emergency Department Rapid Response Network (CCEDRRN). A former personal support worker, she can no longer hold down a full-time job. She’s easily exhausted, and most days finds herself having to choose which single physical task she has energy to complete.

“Some days it’s just showering. It’s like I’m forcing my body up because I am in pain and finding it hard to lift my body up,” Mont explained.

“I have to go sit even when I’m cooking now. I can’t be standing over the stove for a long time. So I’m actually bringing a chair in there or I’m going and sitting at my table while something is on the stove.”

She said finances are a major concern for many who remain sick after being deemed recovered from COVID. She’s calling on the federal government to provide funding to assist provinces with establishing specialized long-haul COVID clinics.

Mont also believes there needs to be a federal subsidy provided to long haulers who are too ill to work and who have exhausted all options, including EI sickness benefits.

“It’s not like they haven’t put enough money into so many other things related to COVID,” Mont said. “One would think that the people who did manage to come out the other end of it but who are still struggling should be supported somehow. We need help.”

‘Disheartening’

Last June while in the middle of her own battle with ongoing COVID-19 symptoms, Oakville, Ont. resident Susie Goulding created an online support group to help herself and other survivors suffering and struggling with a variety of post-COVID symptoms.

Last October, the COVID Long Haulers Support Group Canada boasted about 4,600 members. Celebrating its first anniversary this month, that number now sits at almost 14,000.

Goulding said what she’s been hearing from her Atlantic Canada members is discouraging.

“People are screaming in the Atlantic provinces, ‘What the hell is going on, man? There’s nothing here. We don’t have anywhere to go,’” Goulding said. “It’s just disheartening for me to see these poor people suffering like that.”

Goulding said Atlantic Canadians who don’t have a family doctor are especially struggling with long COVID. She believes the low case numbers in this region during the first and second waves put Atlantic Canada at a disadvantage.

“They’re getting all these cases dumped on them and the doctors don’t have any inkling of really what’s going on because they weren’t really exposed to it in the first or second wave,” Goulding said.

Like Mont, Goulding laments a lack of federal funding to help Canada’s COVID long haulers. She’s trying to organize a national roundtable that will include representatives from each province and territory. She hopes to pressure the federal government into funding research into the underlying mechanisms causing long COVID.

Up to 35% of COVID-19 patients experiencing long-term effects

The June 8 release of a pan-Canadian survey of more than 1,000 Canadian long haulers highlighted the impact the illness is having on the brain health of sufferers.

The ‘Report on Pan-Canadian Long Covid Impact Survey’ is described as an alliance between the company Viral Neuro Exploration (VINEx), Neurological Health Charities Canada (NHCC) and Goulding’s Long Haulers support group.

Considered the largest publicly available survey of people living with long COVID in Canada to date, cognitive impairment (brain fog) was among the top reported symptoms along with shortness of breath and fatigue.

In a June 3 media release, the survey authors note current estimates suggesting 25% to 35% of COVID-19 patients are experiencing long-term effects from the virus.

The survey found that 62.3% of respondents had not been diagnosed with a long-term health condition before having COVID-19.

When asked if their long-term health had changed after having COVID-19, 64.5% of respondents indicated it had. In addition, 86% of respondents indicated they hadn’t been admitted to hospital as a result of their COVID-19 infections.

Almost 70% stated they had to take leave from work.

The results were also consistent with other studies that suggest long COVID is “disproportionately impacting women in their middle years.”

The study’s conclusion noted:

While vaccines and physical distancing are important to prevent and mitigate COVID-19, the survey suggests the impact of COVID-19 on brain health will last beyond the pandemic. Survey responses suggest economic, health and societal costs of COVID-19 with consequences on the health sector and labour force.

Goulding said this is further evidence that more resources for the COVID long-haul community is long overdue.

“It’s been over a year and they’ve not really done a lot,” she said. “It’s enough already.”

‘A horror that many people can’t imagine’

A New Brunswick researcher investigating long-term health outcomes of COVID-19 patients says the medical and research community needs to “step up” to support COVID long haulers.

“The long COVID patients, much like all other groups of patients with chronic debilitating disease, have organized, have provided their own support and their own hope, and its appropriate for the research community and the medical community to now step up and provide what we can to support that hope,” Mount Allison University biology professor and researcher Vett Lloyd said in an interview.

Lloyd, a renowned tick and Lyme disease researcher, said post-infection syndrome appears in many — if not most — viral diseases. She said there were post-infection issues and “debilitating outcomes” following the SARS epidemic.

“So that’s a related virus, so it would have been expected,” Lloyd said. “But I think in the early days of the pandemic, everyone was basically just saying ‘How do we cope?’”

Lloyd sees her work with Lyme and long COVID patients as similar.

“What I’m doing is trying to help people who have chronic disabling illness get help from the health care system to regain health,” she said.

Long COVID patients organizing to create their own support network, doctors not being able to help, and patients struggling to advocate for themselves and their children while sick was an all too familiar picture.

“Just the fear and the emotional burden of having something that doesn’t have a name, doesn’t have a test, and you don’t know what’s going to happen,” Lloyd said. “I think that is just kind of a horror that many people can’t imagine.”

On Christmas Eve of 2020, Lloyd launched her national study and survey, Chronic Complications of COVID-19. Intended to study long-term health outcomes among people with confirmed or suspected COVID-19 and those at risk of being infected, by Christmas Day she had 200 respondents.

The survey is still open, but earlier this month she shared some of the captured data with long COVID patients and groups that participated and helped design the survey.

Unsurprisingly, many of the first 600 respondents were from provinces that had a greater number of COVID cases. Even though Ontario, Alberta, Quebec, and BC had higher response rates, Lloyd said there was still a “strong response” from the Maritimes, including “a healthy chunk” from Nova Scotia.

“It was mostly filled in by people who have ongoing symptoms after COVID … but we had a few healthy people and a few people who recovered quickly,” Lloyd said.

“That’s really valuable too because it means when we’re looking at risk factors, we can compare what’s different between the people who recover their health and the people who don’t.”

‘Ongoing impact is going to be horrible’

Lloyd said the big takeaway from the survey comes as no surprise to the long COVID community. Researchers found their quality of life had deteriorated with their illnesses, impacting their physical and mental health, employment, and income.

“The people with long COVID are reporting worse symptoms than many of the people going through acute COVID even at the worst of their illness,” Lloyd said. “And obviously, the ongoing impact on their life is going to be horrible.”

She said the survey responses included “heartbreaking stories” of patients being dismissed and sometimes laughed at by health care providers. She described some of the responses as unhelpful and cruel responses.

She was heartened to hear Nova Scotia has recognized the need for — and is working on — a multidisciplinary approach for treating its long COVID patients.

“There also needs to be a pathway for the frontline health care workers, the primary care providers, to send people with these complex multi-system diseases,” Lloyd said. “One specialist at a time doesn’t help.”

Canadian risk factors and symptoms

Lloyd’s survey results found the same risk factors applied to long COVID in the Canadian population as in other jurisdictions.

Those risk factors include people with asthma or those who had asthma in childhood, people with autoimmune illnesses, and people who had lung damage prior to their COVID-19 infection.

Her results also mirror studies that found more females are afflicted with long COVID than males. The symptoms reported by Canadian patients are also similar to what studies elsewhere have shown, and include pain and unrelenting fatigue.

One surprise? Lloyd said a larger group than expected seem to be experiencing relapsing remitting symptoms. She describes this as important because it suggests there may be multiple biological causes.

“You get COVID, so it’s all the same start, it’s all the same virus, but then that’s interacting with bodies that are very different,” Lloyd explained. “Each individual has different genetics, different age, different prior health conditions, and so ongoing symptoms will have multiple biological causes.”

“I think we need to pay a bit more attention to the people who have relapsing remitting disease because that’s a bit like MS, so it’s suggesting an immune dysfunction component.”

Lloyd was surprised to learn how many long COVID patients who don’t get better receive a diagnosis of chronic fatigue syndrome (fibromyalgia). She said this has ignited excitement from people struggling with that syndrome because like long COVID, there’s no known cause, no test, and no road map.

The hope is that with so many more people being diagnosed with chronic fatigue syndrome from a defined cause, more attention will be given to treatments.

“There’s always been this iceberg of chronic disease in our society that’s largely ignored. People just deal with it as best they can. And now a bit of it has bobbed to the surface, which is the long COVID syndrome,” Lloyd said.

“I hope that there will be societal attention paid to the number of people who are suffering, whether it’s from COVID, whether it’s from some other infectious disease, it doesn’t really matter. Suffering is suffering, so let’s see if we can help.”

Lloyd sees her role as providing information that contributes to hope for patients and helps people who are very ill to better manage their illness. She said while naming the condition is important, patients also need a place to go and tangible information about what to expect.

“Something like, ‘OK, 80% of the people show substantial improvement after this period of time. You need a roadmap and that provides comfort. There’s hope at the end,” she said.

“What I see people searching for is the knowledge they need and the power they need to generate their hope. And that hope has been so far internally generated.”

Prospect Bay resident Nadine Hardiman believes she was infected with COVID-19 early last year during a hospital visit. More than one year later she said she’s still exhausted, suffering from migraines, brain fog, nerve pain, and other health issues that hadn’t plagued her prior to 2020.

She’s collecting stories from other Nova Scotians living with long COVID and hopes that provincial clinics will come sooner rather than later.

Long haulers and vaccines

When Hardiman received her first vaccine, something happened that surprised her. For the first time in more than a year, she was able to taste food.

“I hadn’t tasted a thing until after the vaccine,” Hardiman recalled. “I could taste sweet and cold so I lived on milkshakes for awhile.” Hardiman recalled.

Although purely anecdotal, it would appear that other long haulers are experiencing at least temporary relief from their symptoms following their COVID-19 vaccines.

Dartmouth resident Joe Cullen has been struggling with overwhelming fatigue and shortness of breath since getting COVID-19 last April. A few days after getting his first Pfizer shot last month, what he described as a “wall” in his lungs began to crumble.

“I could just take a deep breath and it didn’t feel like I was breathing through a cheesecloth or something,” Cullen said.

“I took a deep breath and I’m like, ‘Oh hey, this is what my lungs used to feel like.’ It’s odd when you’re without something normal for something like a year.”

In addition to no longer struggling to breathe, his energy has started to return. He was recently able to run on a beach with his dog for almost two minutes, something he couldn’t have done before his vaccine.

He’s trying to remain optimistic about what this means for the future.

“It’s encouraging and I feel my options are opened up a bit more,” he said.

The Canadian Long Haulers support group recently conducted a poll asking members if vaccination had improved their symptoms. Goulding, the group’s founder, said while this appears to happen for “some lucky people,” it pushed her recovery back a few months as her cardiac issues and fatigue returned. She’d like to see research into the issue.

“We did a poll in the group and there were people who felt better indefinitely, people who felt better short term but symptoms returned, people who had no change, people whose symptoms became worse short term and people whose symptoms became worse long-term,” Goulding said.

While Lloyd hopes to capture this potential improvement of symptoms following vaccination in the next phase of her longitudinal study, she’s already heard from long COVID patients who’ve experienced the phenomenon.

“Our assumption is that you have it and then your body eliminates it. So what is the vaccine doing? Could you get improvement even if there is lingering virus, just basically doing a hard reset on your immune system,” Lloyd asked.

“In a way, it doesn’t matter. What matters is people starting to feel better. I think that’s the most optimistic thing I’ve heard basically in the past 12 months.”

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