Sick for over 100 days, COVID-19 patients want more help to cope with disease's 'long-haul' effects

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In early April, Lorraine Graves thought she was slowly recovering from the COVID-19 illness, which she remembers felt likehaving 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 illnesscaused bythe 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 shefirst fell ill in March, Gravesstarted to feel a little better day by daybut then her recovery hit a plateau.

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She now frequently feels tired and short of breath, has pain at the site of old injuriesand 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.'"

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Study looks at patient 'spectrum'

Dr. Margaret Herridge saidlooking 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 countryaim 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 vesselsor can prompt an over-reaction from the immune system.

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Herridge said the aim is to understand how different individuals "may experience the illnessand 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 healthand 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?" shesaid.

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 onand give us the attention and medical support that we need to recoveror a treatment or a cure, whatever it may be," she said.

Graves agreedthat 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 saidscientists 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 monthsto 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."

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Doctors dismissing patients: Graves

Graves said that a recurring complaint in the online support groups is that doctors are dismissing physical symptomsand 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 symptomsand 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 saidthat 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 ashamedor reticent about seeking mental health [help], because this is a pieceof having been this sick."

Written by Padraig Moran, with files from Lauren Pelley. Produced by Julie Crysler.