COVID-19 long haulers are suffering with mild to severe Coronavirus symptoms post-infection. Studies show that approximately 10% of COVID-19 survivors experience prolonged symptoms that can last for days, months and, potentially, years.

Despite emerging studies, doctors are playing catch-up and still don’t know how to help enough of them. COVID long haulers are feeling alone and suffering with a range of symptoms, including body pain, tightness of the chest, headaches, elevated heart rate, fatigue, dizziness, hair loss, blood clots, delirium, and more. 

We will hear real stories from real people. Raising awareness to the growing issue of COVID-19 long-haul illness is crucial in helping the healthcare system adapt and provide the care that COVID-19 long-haul patients need.

Simone Gavros, a twenty-two-year-old COVID-19 survivor, gasps for air while she leans against a creamy coloured wall in her dim-lit basement. She feels a sense of disappointment after a failed attempt to record an instructional video for her Greek dance class, a lively and interactive dance involving vibrant costumes and timeless Greek melodies. 

Simone, who lives in the city of Aurora, fifty kilometres north of Toronto, is a Ryerson graduate student who, prior to the pandemic, taught in-person dance classes to dozens of students ranging from grades one through eight. While her task is to record a video for each class and share content with students via YouTube, completing the dance routine itself is proving to be a challenge. 

Simone, wearing her usual black leggings, Nike runners, and bulky sweatshirt, stands firmly on the carpeted basement floor with her laptop resting on the side table in front of her. She is far enough from the laptop camera to capture a full-length video of her motioning through the steps slowly. “I had my setup ready and I was facing the camera. I just felt that I was going to get right back into it,” says Simone. To the contrary, she finds herself feeling a tight pressure in her chest as she fights to take in deep breaths of air. Simone feels heat rush through her body and realizes that her choice of workout clothing is not ideal for someone recovering from COVID-19, especially with the absence of air conditioning on a warm summer day. 

She is not ready to give up. Simone pushes herself through another dance routine, this time much more complicated and fast-paced. “The grade eight students dance a Pentozali, which is a really quick dance,” she says. “Usually, as fast as it is, I can talk and dance at the same time.”

Instead, as she walks through the steps, she becomes more and more winded with each attempt. Simone angles her face away from the laptop camera, hoping her students won’t detect her exhaustion. She feels as if she is going to faint and continues taking full, deep breathes every few steps. She repeats the routine—marking the steps, pausing, inhaling long, heavy breaths. “When I would face the camera, I would smile and pretend I was fine,” she says. “When my back was to the camera, I was gasping for breath.” 

Simone approaches her laptop resting on the oak side table in front of her and switches gears to a slower-paced song selected for her grade one class. She presses play on her laptop and another instrumental tune begins to radiate from the echoey speakers. Simone dances the most basic of routines in an imaginary circle, helping her grade one students visualize the movements across the floor. This time, it does not even occur to Simone that she could possibly become winded from the slowest-pace, most simple of Greek dances. To her disappointment, she feels her chest tightening as she demonstrates the routine. Less than a minute into the dance, Simone, in a panic, inhales as much air as she possibly can in one deep breath. She pulls through another minute of the song and as the dance comes to an end, she looks to the camera and says, “All right guys, that was the end of the dance. That will be up on your classroom (page), keep practicing.” 

Sadness consumes Simone as she realizes that she simply cannot keep up with the physical demands of teaching dance and that she will likely face the inevitable—taking time away from teaching. Her only source of income will disappear into thin air, for no fault of her own.

Simone is one of over five million COVID-19 long haulers living with serious long-term symptoms that can linger for an indefinite period of time. While mainstream media have identified common long-haul symptoms, such as shortness of breath and brain fog, COVID-19 survivors are experiencing a wide variety of ailments, post-infection, such as body pain, tightness of the chest, headaches, elevated heart rate, fatigue, dizziness, hair loss, blood clots, delirium, and more.

Long haulers are desperate for answers because these effects can last for days, months and, potentially, years. COVID-19 survivors are suffering from an increasing variety of ailments. Despite emerging studies, doctors are playing catch-up and still don’t know how to help enough of them.

Recent studies show that COVID-19 has chronic effects on the kidneys, lungs and heart. We need to hear more from those who are actually suffering with severe, wide-ranging COVID-19 long-haul symptoms to gain a broader understanding of their real, unfiltered experiences. 

(www.globalnews.com)

While Canadian news coverage of COVID-19 began in January 2020, most did not believe that the coronavirus would become a global pandemic and take over 2.57 million lives, to date. Canada’s first case of COVID-19 was reported on January 25, 2020. A man in his fifties travelled from Wuhan, China to Toronto. He called 911 when experiencing mild symptoms. Days later, on January 30, the World Health Organization declared a global emergency as COVID-19 spread outside of China to eighteen other countries. Since then, COVID-19 has taken 22,183 Canadian lives. While the elderly comprise the majority of COVID-19 related deaths, doctors have lost tens of thousands of younger victims, including children and middle-aged people, globally. 

In a COVID-19 webinar in July 2020, Dr. Anthony Fauci, MD, and Director of the National Institute of Allergy and Infectious Diseases, first reported that many were experiencing a post-viral syndrome that could incapacitate individuals for weeks and months after the virus took its course. 

While Toronto’s Sunnybrook Hospital treated Canada’s first COVID-19 patient on January 25, 2020, more than a year has passed and many unknowns regarding the virus and recovery still exist. Doctors have determined; however, that “about 10% (of COVID-19 patients) have symptoms after their acute illness. Most have resolution of those post-infectious symptoms within 90 days, but some certainly have persistent symptoms…that may have significant impacts on daily function” says Dr. Adrienne Chan, Affiliate Scientist and Clinician Investigator specializing in infectious disease at Sunnybrook Hospital. 

A Harvard study by Dr. Anthony Komaroff also shows that a diverse range of chronic illnesses can develop post-infection as a result of COVID-19. The majority of COVID-19 long haulers recover within weeks or months, more specifically three to six months, but there are those who will experience chronic and possibly permanent damage to their lungs, heart, kidneys or brain. Research teams, such as Can Cov, a Canada-wide COVID-19 Prospective Cohort Study based out of University Health Network in Toronto, are studying long haulers and are recruiting patients with COVID-19 to learn more on recovery and chronic effects of the virus.

On a Friday evening in November 2020, Kendelle Wilke-Contraveos, a fifty-two-year-old child caregiver, equestrian and COVID-19 long hauler, was watching a movie with her husband, John Contraveos, in their Melrose Park, Illinois home. 

Both husband and wife had been infected with COVID-19 back in October, after contracting the virus from Kendelle’s dying mother who had not been diagnosed with COVID-19 until after her death. Kendelle had experienced serious long-haul symptoms, including seventy-five per cent hair loss, extreme fatigue, headaches and difficulty breathing. Her husband, however, had not experienced long-haul symptoms, until this evening. 

Laying on the couch, munching on snacks and watching Netflix, John suddenly gasped for air and uttered to his wife that he couldn’t breathe and is feeling chest pain. “He usually prolongs things,” says Kendelle. “He is tough and always sucks it up when he is not feeling well.” This time it was different. In distress, John screamed to his wife to take him to the hospital. Kendelle, drove as fast as she could, 10 miles out, to Elmhurst Hospital where she dropped him at Emergency. “It was very stressful,” says Kendelle. “I was scared and really broke down in the parking lot.” After four hours, he was released. He reported to her that the doctors found blood clots in each lung and had to administer blood thinners to save his life. Disturbed and surprised, Kendelle began to question the early release of her husband, given the severity of the diagnosis.

The Contraveos are not alone in experiencing severe and life-threatening COVID-19 long-haul symptoms. Jelisa Porter, a COVID-19 long hauler from Jackson, Mississippi, has been living a nightmare since she was diagnosed with the virus on January 3, 2021. While her case of COVID-19 was mild, she began to experience strange and concerning symptoms about a month later. It started with insomnia and chills throughout the night and progressed to other unusual ailments.

Jelisa’s first long-haul experience occurred one evening when sitting on her bed, talking to a girlfriend on the phone. As she was chatting, she noticed her hand turning an unusual shade of purple. Jelisa panicked and began to hyperventilate. She seemed to be having an anxiety attack, overwhelmed by what was happening. She dropped her phone on the bed as she heard her friend trying to calm her down. She felt a tingling sensation consume her hands, arms and legs. She began to experience delirium. “All of a sudden I’m seeing things,” says Jelisa. “I saw spirits.”

Agitated by the eerie experience, Jelisa contemplated whether to call 911 or just curl up in bed until the attack subsided. Before she could make a decision, a sense of calm arrived. The panic subsided and the tingling gradually vanished. Still, Jelisa was terrified that that these could be long-haul symptoms. The doctors who examined her determined that she was suffering from elevated blood pressure and dehydration. Alas, they could not explain her inability to sleep, her chills, the discolouration in her hand, or her anxiety attack. 

Medical professionals are working relentlessly to find answers and improve the quality of life of COVID-19 long haulers. Based on over one year of data, doctors have determined that the onset of long-haul symptoms and their severity are based on a combination of factors. “Pre-existing conditions, age, the intensity of the immune response and the strain of the virus affect the severity of the virus and it’s long-standing symptoms,” says Dr. Hugues Loemba, a clinician-researcher, family doctor and virologist at the University of Ottawa. Research shows that variants are more aggressive than previous strains and this can lead to more severe symptoms during infection and an increase in the persistence of chronic effects. “Many people with long-term effects have pre-existing conditions, such as diabetes,” says Dr. Loemba. “Another factor is how intense the overreaction of the immune system of a person is.” This can lead to inflammation and tissue damage that can also result in long-lasting damage to organs, such as the heart and lungs.

As a family doctor, Dr. Loemba must refer his COVID-19 long-haul patients to specialists, such as neurologists and cardiologists, who specialize in treating the patient’s specific ailment. He believes that a clinic exclusively for COVID-19 long-haul patients, that comprises of specific treatment for COVID-19 recovery, is necessary in every province. The number of long-haul patients is rising significantly in Canada and globally.

London, Ontario’s COVID Care clinic has combined a team of nurses, physicians and other health-care professionals that have specialized training in treating COVID-19 patients. The team is also conducting clinical trials and research studies that are aimed at improving COVID-19 patient care and treatment. This is a model that other provinces can follow to take the first steps in the recovery of thousands of COVID-19 long haulers.

Dr. Jennifer Reed, a scientist in the Exercise Physiology and Cardiovascular Health Lab at the University of Ottawa Heart Institute, is playing an instrumental role in COVID-19 long-haul research. These days, her work in the lab mainly involves data collection and analysis involving people with pre-existing conditions. A few months back, Dr. Reed was thrilled to receive funding for a COVID-19 specific trial. “It’s a prospective trial over six months, where we recruit over one thousand older adults with cardiovascular diseases,” says Dr. Reed. “We look at whether physical activity affects those that contract COVID-19 and outcomes associated with COVID-19.”

On a snowy February morning, Dr. Reed enters her tidy office in the Ottawa Heart Institute, a few streets over from the Ottawa Hospital. She begins her day with coffee in hand, intensely examining her MacBook screen. She is studying the data collected from a questionnaire her team had distributed via email a few days earlier to participants in the COVID-19 study. While it is too early in the process to jump to conclusions, Dr. Reed ponders the hypothesis that the participants who are regularly active will experience less severe COVID-19 symptoms and long-haul effects. She imports the questionnaire data into an Excel file and from there, inputs it into an internal database system. Dr. Reed begins a statistical analysis for this dataset in the early stages of the trial. It will be months to years until this data can be scientifically reviewed and interpreted for its meaning in the long-term recovery of COVID-19 survivors.

The first case of the UK variant, B.1.1.7, was reported in Canada on December 26, 2020. Since then, medical professionals have questioned the effectiveness of vaccinations and are worried that the variants will put more strain on the healthcare system. This is further complicated by an ever-expanding list of variants including the Brazil variant, P.1, and South Africa, B.1.351. Researchers are facing a whole new set of unknowns including questions like—does the virus caused by the new variants differ from the virus caused by the original Coronavirus strain? Will the variants affect existing therapies, vaccines, and testing? Recent studies have shown that the variants are significantly more contagious, resulting in increased transmissibility. Studies have also shown that there is an increased risk of severe illness and death and decreased vaccine efficacy

Researchers are working around the clock to determine whether the new strains of COVID-19 will cause more severe disease in those infected. Also, they are looking to determine if there is a change in the type and severity of long-haul symptoms post-infection. While this remains a mystery, Simona Gelao’s experience with COVID-19 may provide some insight. She is a two time COVID-19 survivor, long hauler and a mother of two, living in the Greater Toronto Area. In March 2020, Simona, a librarian in her early 40s, and her two children were diagnosed with COVID-19. They experienced common symptoms, such as fever and persistent flu-like ailments. Fortunately, Simona and her two young children did not experience long-haul symptoms, post-infection. 

One year later, on March 27, 2021, Simona, her husband and two children were tested for COVID-19. The entire family was diagnosed with the virus and her symptoms varied significantly from the illness she experienced last March. While it took a week for Simona to start experiencing symptoms, this second bout of Coronavirus was more severe. “I had really weird symptoms,” says Simona. “I woke up one day and couldn’t move my legs (due to pain), and my hips were in excruciating pain.” After five days of extreme pain in her legs and arms, she started to experience shortness of breath and other common COVID-19 symptoms. Simona attributes her varied symptoms to the rampant spread of variants in Ontario. Variants of concern in Ontario include: B.1.1.7 (first detected in the UK), B.1.351 (first detected in South Africa) and P.1 (first detected in Brazil).

Weeks went by and Simona’s symptoms took a turn for the worst. “I was crying because I didn’t understand why I was in so much pain,” she says. “I couldn’t find a comfortable position and the medication didn’t work. Every day, it felt like I was having a heart attack.” Simona’s heart rate was persistently low, at 43 beats per minute, and she often felt dizziness. 

Simona immediately grabbed her cell phone off the kitchen table and dialed 911. The ambulance arrived within 5 minutes and her husband opened the door and guided the paramedics to the couch where Simona lay. An EMT checked her vitals and reported that her oxygen levels were normal but heart rate was slow and unstable. The paramedics asked Simona if she wanted to be transported to the hospital and warned her that the hospitals in Toronto were over capacity and that she could end up at a hospital further away from home. Simona’s vitals became stable within minutes and she decided to stay home to avoid further exposure to the virus. The paramedics stayed with Simona for a few moments longer as she regained her composure and the pain began to subside. This was an experience she will never forget.  

After weeks of waiting for an appointment with a specialist, on April 20, Simona visited a Toronto cardiologist. The doctor conducted specialized testing including x-rays and an ultrasound of her heart, to determine if she was experiencing pericarditis, inflammation of the lining around the heart as a result of the COVID-19 infection. She, now, awaits her results and hopes her story will raise awareness of the severe long-haul symptoms that may be associated with the new strain of COVID in Ontario.

Dr. Jeffrey Siegelman, an emergency medicine physician and assistant professor at Emory University in Atlanta, has a unique perspective on COVID-19 patients and long haulers. On August 3, 2020, he began to experience common COVID-19 symptoms including headaches, loss of taste and smell, fever, and fatigue. 

While Dr. Siegelman’s illness was deemed as mild, he experienced persistent symptoms post-infection that varied each day and worsened each evening. Fever, headache, dizziness, chronic fatigue, heart palpitations and tachycardia were some of his long-haul symptoms. Dr. Siegelman required a six-month recovery period before feeling strong enough to resume with his daily activities. 

As a medical professional, Dr. Siegelman is trained to collect objective evidence that provides scientific reasoning for a patient’s ailment. Objective evidence includes results of medical tests, such as laboratory testing and imaging. Doctors are trained to follow a specific set of steps and utilize conclusive testing to deduce the cause of a patient’s suffering. If they fail to find any abnormalities, doctors are accustomed to discharging a patient and potentially referring them to a specialist.

Dr. Siegelman’s personal experience with COVID-19 led him to better understand both ends of the spectrum; the perspectives of medical health professionals, COVID-19 patients and long haulers. Dr. Siegelman underwent imaging, oxygen saturation, and laboratory testing for his COVID long-haul symptoms, including shortness of breath. While his results came back normal, he did not feel ok. Many days, he found it a challenge to simply lift himself off the couch. Dr. Siegelman’s evolving symptoms post-infection, changing from one day to the next, created a sense of fear and anxiety. Discovering that the test results came back clean was unsettling for Dr. Siegelman. 

While his doctor empathized with him and provided the latest research on his condition, there was no explanation as to why he experienced symptoms for months after infection and no treatment was prescribed. Dr. Siegelman, like thousands of other COVID-19 long haulers, felt alone and afraid for his well-being. 

Alas, Dr. Siegelman found the positives in this situation, even in the most challenging of times. His experience reminded him of the importance for doctors to prioritize listening to the patient above all else. Now, more than ever, medical professionals must look outside the box and tailor their procedures to meet the needs of each individual patient. A multi-disciplinary approach may pave the way for better care for patients, introducing collaboration among various healthcare experts. They include general practitioners, specialists, occupational therapists and psychologists, for a more holistic approach to provide better care for patients. Dr. Siegelman was reminded of the fact that, while tests may be within normal limits and patients may appear to be well, their symptoms are real and action must be taken to alleviate suffering.  

Many doctors, like Dr. Siegelman and Dr. Loemba, are seeking a change in the healthcare system. A multi-disciplinary approach where medical professionals work together under one roof in specialized centres for long-haul patients may bring positive change.

Rachel Evanson, a nurse and COVID long hauler living in Nevada, reflects on why a new approach is crucial. Her COVID-19 symptoms began on November 2, 2020, and she faces severe long-haul symptoms to this day. Rachel has been experiencing acute nerve and chest pain, panic attacks, trouble breathing and the swelling of her organs. “I received minimal support from the healthcare system,” says Rachel. “The physicians I saw had not read-up on the articles (research) and I felt like they weren’t willing to try.” Rachel was left waiting for an abdominal ultrasound, to determine if her liver was swollen, for 65 days. She has yet to have ultrasounds for other organs in her body. While Rachel looked healthy on the outside and testing failed to bring conclusive results, she felt that doctors dismissed her symptoms. “I don’t expect them (doctors) to have the magic bullet but I want to have an informed conversation with them,” says Rachel. “They should give suggestions and say maybe this is what’s going on and maybe this will help.” While an x-ray of her lungs also came back normal, she was left with crushing chest pain and no answers. When Rachel’s doctor attributed her symptoms to psychological causes, she felt more alone than ever.             

While healthcare professionals have gone above and beyond their call of duty during this time of crisis and millions of doctors have done their best to support long-haul patients, it is important to remember that patients need validation. They should be reminded that their symptoms are not in question to allow for patients to focus on their emotional healing and recovery. A collaborative, proactive and empathetic approach is the first step in this transition of the healthcare system

Rachel Evanson was putting her two children to sleep, one evening in December 2020. Her five-year-old son and seven-year-old daughter each lay in their own beds, looking up at Rachel. As she sat on the edge of her son’s bed, she gazed into her children’s eyes and felt a feeling of fear. Fear that she would not be there for her children. Fear that her body would not be strong enough to make it through months of serious long-haul symptoms. With tears in her eyes, she took a deep breath and reminded her children that they will never be alone and that, even if you don’t see a loved one, they will always be watching over them.

Rachel’s daughter understood her mother’s message and began to poke her cheeks with her index fingers, something that she often did when upset. Rachel’s daughter peered up at her, with glassy eyes, and Rachel felt a deep pain that she will never forget. 

COVID-19 long haulers are Canada’s forgotten patients. A study concluded that over 60% of long haulers are not receiving the medical attention they need. “The Long Haul” was written to raise awareness of this gap in our healthcare system. Please refer to the Resource page for long COVID support – we’re all in this together.