In early April, Lorraine Graves thought she was slowly recovering from the COVID-19 illness, which she remembers felt like having her lungs filled with egg whites rather than air.
But more than 100 days later, she’s still sick, and among the self-styled “COVID-19 long haulers,” experiencing symptoms long after their initial illness caused by the novel coronavirus.
“I can do the stairs in our house three times in a day, and if I do it a fourth time, I can’t get off the couch the next day,” said Graves, a science journalist in Richmond, B.C.
“It feels like in the morning when you wake up and you haven’t had your coffee yet … I feel like that all the time,” she told The Current’s guest host Nahlah Ayed.
After she first fell ill in March, Graves started to feel a little better day by day but then her recovery hit a plateau.
WATCH | What it’s like to recover from COVID-19:
She now frequently feels tired and short of breath, has pain at the site of old injuries and suffers from what she calls “brain fog.”
“I’m a journalist. I’m a wordsmith, and my typing was atrocious — and I couldn’t spell atrocious,” she said.
“I couldn’t remember words. I tried to think of the word for that yellow spring flower, and it was 20 minutes before I remembered they’re called daffodils.”
A recent column in the British Medical Journal cited statistics showing 10 per cent of people had symptoms at 25 days, and five per cent were still sick one month later. Those figures were recorded via a symptom-tracking app developed at King’s College London, which has been downloaded by almost four million people.
Graves said that if you didn’t end up in hospital on a ventilator, there’s an assumption you weren’t that sick. She worries that could be a barrier to getting help for longer-term symptoms.
“We’re now still struggling to say, ‘Listen to us. Just because we weren’t hospitalized, we were very sick. And even people who weren’t horribly sick are having trouble now.'”
WATCH | COVID-19 immunity may only last few months, research shows:
Study looks at patient ‘spectrum’
Dr. Margaret Herridge said looking at COVID-19 “across the spectrum” of patients is a key part of her new research: the Canadian COVID-19 Prospective Cohort Study (CANCOV). It is the first study in Canada to assess health outcomes for COVID-19 patients over a one-year period.
Led by Herridge and her co-lead Dr. Angela Cheung, more than 100 investigators across the country aim to evaluate 2,000 COVID-19 survivors and their family caregivers, testing things like their ability to carry out daily activities, cognitive capabilities and mental health.
Participants will range from people who were sick but never hospitalized, to those who became critically ill in ICU, said Herridge, a critical care physician with the University Health Network in Toronto.
Since it first emerged late last year, the understanding of COVID-19 has shifted from a respiratory illness to one that attacks multiple organs, with some theories suggesting it is an illness of the blood vessels or can prompt an over-reaction from the immune system.
WATCH | COVID-19: What’s known, what’s probably not true, and what we need to find out
Herridge said the aim is to understand how different individuals “may experience the illness and importantly, experience recovery, in very unique and different ways.”
“That becomes very important in terms of … policy issues, trying to reach out in more specific ways with rehab, with mental health and really trying to target therapeutic interventions.”
Patients find support online
Support groups for COVID-19 long haulers have cropped up on Facebook, with Graves saying they’re filled with reports of “this relapsing, remitting, this roller-coaster.”
“Will we have this the rest of our lives, or is there a way that we can do something that cuts down on the long-term consequences?” she said.
Heather Colton, a 25-year-old fast-food worker in Belleville, Ont., has also been seeking support online.
She got sick in late March, and despite the efforts of her doctor (who she described as very helpful), she’s still not well enough to return to work.
“It’s so hot where I work and just being in the normal heat, I have trouble breathing,” she said.
“I’ve been having issues with my heart rate shooting up to 140, 150, 160, just walking to one room from another.”
She wants more help for people stalled in recovery.
“I believe that they need to do the research to find out why COVID is turning into this long-haul journey that we’re all going on and give us the attention and medical support that we need to recover or a treatment or a cure, whatever it may be,” she said.
Graves agreed that the “government needs to fund more, the health units need to pay attention because we’re going to have long-term problems that cost us a lot if we can’t do therapy now.”
They need to do the research to find out why COVID is turning into this long-haul journey.– Heather Colton
Herridge cautioned that “it’s important to base policy on rigorous scientific data, and it does take a bit of time to accrue.”
In the meantime, she said scientists and policy-makers could look to previous outbreaks like SARS.
“Some of the complaints that Lorraine and Heather were discussing with you were complaints that we saw in SARS patients months to up to a year later,” she told Ayed.
We will have “a lot of people who’ve been very sick, who will have long-term repercussions from this,” she said.
“I think we can know that, based on SARS and other illnesses historically.”
WATCH | COVID-19 modelling suggests we’re in it for the long haul:
Doctors dismissing patients: Graves
Graves said that a recurring complaint in the online support groups is that doctors are dismissing physical symptoms and suggesting “psychiatric care.”
“So many women are talking about this to their doctors and … their doctors are saying, ‘Oh, it’s just emotionally caused.’ And it’s not,” she said.
Herridge said patients should trust their symptoms and seek medical help that can offer “supportive management.”
“I think it’s very important that their symptoms and complaints are really validated and taken seriously.”
She said that patients and their families should seek “mental health support in addition to the physical health support.”
“We know from SARS that there were a lot of new mood disorders and mental health issues apart from the physical issues,” she said.
It’s important “not to feel ashamed or reticent about seeking mental health [help], because this is a piece of having been this sick.”
Written by Padraig Moran, with files from Lauren Pelley. Produced by Julie Crysler.