COVID Long-Haulers

"I'm week 17. I had mono[nucleosis] when I was a kid and this is tenfold worse. I've been isolated, I'm paranoid about seeing people. It really affects you deeply."
"[First came a scratchy sore throat, then] bam -- it felt like something slammed me in the back of the neck [body aches, heartburn, a] strange, twitching feeling in my heart."
"[I'm struggling with] absolutely terrible brain fog."
"They only had a few symptoms listed [at first, back in March]. Now you go to hospital and there's a long list of symptoms. If you have anything but a cut finger."
Susie Goulding, single mother, Oakville, Ontario, COVID recovery

"I still feel strange things, but I have never been so long in my life without playing a basketball game."
"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."
Rudy Gobert, NBA Utah Jazz centre, 28

"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."
Long Haulers Support Group Canada

"This stuff is real. These people are trying to navigate an illness that bites back like a demon if you overdue it, batters you physically and mentally, and leads you to doubt your own sanity." 
"[For some people recovery from COVID-19 relates to arms and legs] permanently fizzing as if injected with Szechuan peppercorn."
Dr.Paul Garner, professor of infectious diseases, Liverpool School of Tropical Medicine

"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."
"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."
"We need to keep a very open mind, not be judgmental, not be dismissive, and to study it and really understand how the virus is affecting people in often profoundly different ways."
Dr.Margaret Herridge, professor of medicine and critical care, University Health Network, Toronto

Chandra Pasma and her husband Matt Helleman say they first got sick with COVID-19 in mid-March, along with their three children. The entire family is still battling the illness 10 weeks later. (Supplied by Chandra Pasma)

According to the February statement coming out of a World Health Organization mission to China, it takes  about two weeks to recover from mild COVID-19, and for severe or critical infections, three to six weeks are required for full recovery from the respiratory disease. That was then. This is now. Now, John Hopkins researchers noted that though early testing for COVID is critical, by Day 21 of infection, the chance of a false negative result, when a virus fails to be detected where someone has contracted or was recently infected, is 66 percent.

The Public Health Agency of Canada refers to 72,000 Canadians having "recovered" from COVID-19, some of whom it is now known, are experiencing mysterious residual symptoms related to their bout with the disease. Widely reported symptoms are inclusive of mind-numbing fatigue, profuse sweating, muscle aches and joint pain, gastrointestinal complaints, bubbling, burning feelings in the chest, pounding headaches, skin rashes, and severe shortness of breath. Recovery for many is not a short-lived and symptom-free process.

Support groups have been appearing on line, enlisting the participation of thousands of long-haulers to share their symptoms and find encouragement and emotional support of others suffering similar, puzzling and life-complicating illnesses. There is strength in numbers, and in this instance a collective membership of such self-help groups can have an impact, urging federal and provincial chief public health officers to engage in research and support for those undergoing COVID symptoms of long-lasting effect.

Throughout the medical community there have been supportive doctors and alternately, many who are dismissive, telling patients that it is anxiety that is complicating their lives. A research letter coming out of a study of 143 people with COVID who were hospitalized found 87 percent reported at least one lingering symptom; in particular, fatigue and shortness of breath, and chest and joint pain, as well, 60 days following the onset of COVID, the results published in JAMA.

Of the total number in the study, only 121 percent 60 days following COVID onset, were free of any COVID-19 related symptoms, while 44 percent reported "worsened quality of life", had ensued. Research conducted by Dr.Herridge, a world expert in the legacy of critical illness, corroborated the findings, relating to her own experience as a professional in critical care.

A study of 109 people hospitalized with acute respiratory distress syndrome (ARDS),  where relatively young individuals were seen with "persistent exercise limitations and reduced quality of life", and were reported by Dr.Herridge and colleagues, published in the New England Journal of Medicine.

Caregivers reported a significant drop in mental well-being of 117 SARS-1 survivors from Toronto, 17 percent of whom had not returned to work after a year -- 51 of the total had needed 668 appointments with psychiatrists or psychologists. The illness caused by the SARS-CoV-2 virus not only attacks the lungs, causing acute respiratory distress syndrome but attacks the endothelial cells, lining the inside of blood vessels in the gut, kidney, heart and brain, as well.

"We've had five cases of patients who've had to have their gut removed. You see these cases and you say, wait a minute, the virus is doing this, too?", remarked Dr.Rochelle Walensky, infectious diseases physician at Massachusetts General Hospital. Those people who survived an ICU stay are now experiencing lingering symptoms as well; in problems linked to thinking and memory, fatigue and weak muscles. Whether this is a direct effect of the virus or instead a combination of the virus and medications meant to purposely paralyze the muscles to ease intubation is unknown.

Dr.Larry Pancer spent 17 days on a breathing machine at Markham Stouffville Hospital, where once he had directed the department of pediatrics there. He was informed that for each day spent on a ventilator, seven days are required to recover. "I was having chest pain and shortness of breath, probably for several days before I went into hospital. I'm used to being on the other side of the bed. I feel 24 hours a day like you would feel if you climbed 20 flights of stairs."

"I had to reteach myself how to walk. Cognitively, I feel okay. I'm doing well.  I'm living independent. I'm cooking and tidying and paying my bills. I've got my dogs that I walk three times a day", he says. Sealed off in the ICU, unable to see family and friends because of strict COVID-19 "no visitor" rules was the most difficult part of the situation for him. "Some are very, very weak and very fatigued", explained Dr.Mark Bayley, program medical director for the Toronto Rehabilitation Institute.

The mental health issues, depression and other symptoms afflicting some people post-COVID are theorized to be related to changes in blood flow to the brain, injuring areas vital to mood. The virus and the injury itself is responsible for the complications. "Some [people] are really anxious that they aren't going to get back to the way the were before", sad Dr.Bayley. "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", explained Dr.Andrew Morris, infectious disease expert at the University Health Network in Toronto.

A nurse monitors a patient on a ventilator in a COVID-19 ward at Cremona Hospital in Cremona, Italy. Marco Mantovani/Getty Images / PNG

"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."  It is the symptoms being reported by people who were not critically ill suffering dizziness, trouble sleeping, ringing in the ears that present difficulties in explaining. "It's been a three months since recovering. Now my hair is falling out, is anyone else experiencing this joyful crap?" posted a woman on the 72,000-member Survivors Corps Facebook page

"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."
"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."
"There will be people who have had COVID infections who are definitely going to fit into this longhauler kind of category."
"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."
Dr.Andrew Morris, infectious diseases expert, University Health Network, Toronto