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'This stuff is real': COVID-19 symptoms can linger for months, long haulers say

National Post Thursday, 16 July 2020
Susie Goulding of Oakville, Ont., started showing symptoms of COVID-19 in March, just as things were starting to lockdown. She had a scratchy sore throat and then, five days later, “bam — it felt like someone slammed me in the back of the neck.” Her symptoms came in waves, she said  —  body aches, heartburn, a “strange, twitching feeling in my heart.”

In late February, a World Health Organization mission to China reported upon its return that it takes approximately two weeks to recover from mild COVID-19, and three to six weeks for severe or critical infections.

“I’m week 17,” Goulding said Tuesday.

She’s struggling still with “absolutely terrible brain fog,” losing her train of thought mid-sentence, and said even just thinking about moving is exhausting. “I had mono when I was a kid and this is 10-fold worse,” the single mother of a 12-year-old son said. “I’ve been isolated, I’m paranoid about seeing people. It really affects you deeply.”

Was she tested? “Now this is the thing that many of us are finding,” Goulding said over the phone. Like many long haulers, Goulding, a floral and event designer, was denied a COVID test in March, because she didn’t fit the early criteria for testing, and when there was a global shortage of swabs. She also didn’t have a fever. “They only had a few symptoms listed at that time. Now you go to hospital, and there’s a long list of symptoms. If you have anything but a cut finger. But …. Sorry, I forgot what you were asking?”

Goulding was eventually tested, more than two months after she stared feeling ill, w hen an emergency doctor told her it looked like COVID . It came back negative. However, J ohns Hopkins researchers have noted that early testing is crucial, that by Day 21 of being infected, the chance of a false negative result — when a virus isn’t detected in someone who actually is or recently was infected — is 66 per cent. Still, Goulding has met with the attitude, “if your test was negative, then what are you complaining about?”

Rudy Gobert, the first NBA player to test positive for COVID-19, just days after jokingly running his hands along reporters’ microphones at the end of a media briefing, told the French outlet L’Equipe two weeks ago he still hasn’t fully recovered. “I still feel strange things, but I have never been so long in my life without playing a basketball game,” the 28-year-old Utah Jazz centre said. ”I don’t know if that is it or the aftermath of the virus …But I had experiences, a month and a half ago, which scared me. I felt like ants in my toes and wondered what it could be. There were quite a few little things like that.”

For long haulers, there appears plenty to complain about. And they’re wondering, when will it end?

According to the Public Health Agency of Canada, nearly 72,000 Canadians have “recovered” from COVID-19. But for some, recovery means arms and legs “permanently fizzing as if injected with Szechuan peppercorn,” Dr. Paul Garner *,* a professor of infectious diseases at Liverpool School of Tropical Medicine blogged in the British Medical Journal. Other widely reported symptoms include mind-numbing fatigue, profuse sweating, muscle aches and joint pain, gastrointestinal complaints, bubbling, burning feelings in the chest, pounding headaches, skin rashes and a shortness of breath that can leave people unable to blurt out a full sentence after walking up a slightly-sloped driveway.

Thousands of long-haulers are sharing symptoms on online support groups. (Goulding recently created a Facebook page — Long Haulers Support Group Canada. ) I n a recent open letter, members of LonghaulCovidCanada urged federal and provincial chief public health officers to commit to research and support for people experiencing COVID-19 symptoms that last long after the “tidy” two weeks the official guidelines say mild cases take.

“Many of us have had cases that did not require hospitalization and yet we are having persistent symptoms three, four, even five months after symptom onset,” their appeal reads. Some doctors have been supportive, many more dismissive.  People have been told their problem is anxiety, that they’re “milking it,” wrote Garner *,* who wasn’t certain he had COVID-19 until he spilled bleach on his hands and couldn’t smell the chlorine. This isn’t some post-viral fatigue syndrome, Garner said. “This stuff is real. These people are trying to navigate an illness that bites back like a demon if you overdo it, batters you physically and mentally, and leads you to doubt your own sanity.”

A research letter published this week in JAMA bolsters their case . The study of 143 people hospitalized with COVID-19  found that 87 per cent reported having at least one lingering symptom — fatigue and shortness of breath in particular, but also chest and joint pain, 60 days after first becoming sick. Only 12 per cent were completely free of any COVID-19 related symptoms; 44 per cent reported a “worsened quality of life.”

Despite the relatively small number of people studied, it fits with research done by Dr. Margaret Herridge, a professor of medicine and critical care at the University Health Network and world expert in the legacy of critical illness.

In one study of 109 people hospitalized in Toronto with acute respiratory distress syndrome, or ARDS , even relatively young people had “persistent exercise limitations and reduced quality of life” five years later, Herridge and colleagues reported in the New England Journal of Medicine.

In an another study of 117 SARS-1 survivors from Toronto , 17 per cent had not returned to work by one year, 51 people required 668 visits to psychiatrists or psychologists, and their caregivers also reported a significant drop in mental well-being.

The virus that causes COVID-19 also causes acute respiratory distress syndrome, but it’s a more complicated animal. It  affects more than the lungs. It also attacks the endothelial cells lining the inside of blood vessels in the gut, kidney, heart and brain. “We are seeing strokes, we’re seeing hemorrhages in the brain, we’re seeing some diffuse brain injury, kidney failure problems, involvement in the heart in various ways, some liver problems as well,” said Herridge. A multi-system mess of injuries.

“We’ve had five cases of patients who’ve had to have their gut removed,” Massachusetts General Hospital infectious diseases physician Dr. Rochelle Walensky told STAT . “You see these cases and you say, wait a minute, the virus is doing this, too?”

People sick enough to be hospitalized with COVID-19, especially those who survived an ICU stay, are experiencing lingering symptoms as well — problems with thinking and memory, fatigue and weak muscles. It’s not clear whether it’s a direct effect of the virus or a combination of the virus and medications used to purposely paralyze the muscles to “aid” intubation.

Pediatrician Dr. Larry Pancer was told that for every day spent on a ventilator it takes seven days to climb back. Pancer spent 17 days on a breathing machine at Markham Stouffville Hospital, where he once ran the department of paediatrics. “I was having chest pain and shortness of breath, probably for several days before I went into hospital.” Things got worse. He got up one night in the middle of the night and had a “syncope attack” — he fainted. So he called 911. Pancer the doctor was completely unprepared for being ventilated. “I’m used to being on the other side of the bed.” He recalls very little of it because he was sedated, but at one point he was convinced he was in a single bed at his cottage with his wife, Patricia, who died three months before he was admitted to hospital with COVID on March 20.

Pancer is home now. He’s still struggling with shortness of breath. “I feel 24 hours a day like you would feel like if you climbed 20 flights of stairs.” He clears his throat a lot, and talks in shorter sentences, pausing to stop and catch his breath.  For a while, he had no voice at all because of the prolonged ventilation. “I had to reteach myself how to walk,” he said. When he first returned home from the hospital, he was so weak he struggled to pull the tab off a can of pop. “Cognitively, I feel okay. I’m doing well, I’m living independently. I’m cooking and tidying and paying my bills. I’ve got my dogs that I walk three times a day.” The hardest part was the isolation, being sealed off in the ICU, and after he left the ICU, his family and friends unable to see him because of strict COVID-19 “no visitor” rules.

Other ICU survivors like Pancer are trickling into rehabilitation centres across Canada. “Some are very, very weak and very fatigued,” said Dr. Mark Bayley, program medical director for the Toronto Rehabilitation Institute. Some are experiencing mental health issues, particularly depression, possibly due to changes in blood flow to the brain that injures areas important for mood. It’s coming from the injury and the virus itself, Bayley said, “not from people being sad about what happened to them. Some are really anxious that they aren’t going to get back to the way they were before,” he said. They still don’t feel back to their normal selves 12 weeks later.

But that is often true for people who spend any amount of time in an ICU. Whether it’s any worse for COVID is unknown. “It’s still early days — nobody has survived a year out of being infected with COVID, so we don’t know what the long-term implications and outcomes are,” said Dr. Andrew Morris, an infectious diseases physician at Toronto’s University Health Network.

“But it will not surprise any of us that there will be a substantial portion of the population with severe COVID who will have lingering effects down the road.”

More difficult to explain are the symptoms being reported by people who weren’t critically ill: dizziness, trouble sleeping, ringing in the ears. “It’s been 3 months since recovering. Now my hair is falling out, is anyone else experiencing this joyful crap?” one woman posted on the 72,000 member Survivors Corps Facebook page.

· Canada's imperfect COVID-19 response is still better than the U.S.
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· In Canada, the cases of COVID-19 and deaths are declining. Here's the story behind the numbers

Unfortunately, anecdotal reports “don’t provide a rigorous enough or precise enough answer to the question,” said McMaster University infectious diseases specialist Dr. Mark Loeb. The most likely explanation might be a prolonged or exaggerated immune response to the viral infection that lasts “well beyond the time that you would expect.”

With long haulers, it may just be that their whole physiology hasn’t returned to fully normal. But it’s hard to test for that, which is frustrating for people, Morris said. “There will be people who have had COVID infections who are definitely going to fit into this long-hauler kind of category,” he said. “And then there’s probably going to be a substantial portion of those people who won’t have COVID, and I think what we’ve learned over decades with poorly categorized illness is that there are people, for a variety of reasons, who have complaints and symptoms that we can’t fully explain.”

Herridge, who, together with Dr. Angela Cheung, is leading a national study to unravel the full spectrum of COVID-19 illness, said it’s important to hear what people are saying. “I would never say that this was just some sort of a psychological manifestation and be dismissive of it — I would never say that.

“We have to be very respectful of the symptoms that people are reporting to us and take them seriously,” Herridge said. “We need to keep a very open mind, not be judgemental, not be dismissive and to study it and really understand how the virus is affecting people in often profoundly different ways.”
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