Why are they still sick? The latest clues in the mystery of COVID-19 long haulers

More than five million people have died from COVID-19. But there is concern the toll from the disease could be much higher, as the number of long haulers continues to rise.

It can happen to anyone and at any age, and there is a growing body of evidence showing that people who suffered from mild or no symptoms, could be at risk of getting Long COVID.

It varies from person to person and is proving challenging to treat. Experts say there could be more than 100 different symptoms associated with the condition.

Unexplained pain, exhaustion and a racing heart 

Katy McLean used to be vivacious, active and fit. Today, the 43-year-old spends most of her days inside her home, moving from chair to chair because overwhelming fatigue and Postural Orthostatic Tachycardia Syndrome (POTS) make her feel wildly ill if she stands for too long.

“When I stand up, my heart rate goes really, really high. So, it’ll go up to like 100 and 120 in the first 60 seconds that I’m standing,” said McLean, who lives in Vancouver, B.C.

“And so, it feels like I’m running and my blood pressure drops, and then I get dizzy and feel sick.”

McLean first got COVID-19 in September 2020. She said she was starting to get better but in February of this year, she had a relapse and all of her initial symptoms came back.

“I had shortness of breath, chest pains, palpitations, extreme fatigue, crazy headaches, dizziness. I also lost my smell and taste again,” she told Global News’ current affairs program The New Reality.

“I was in so much pain. I was so weak … I literally couldn’t bathe myself. I couldn’t eat solid food,” McLean said.

“I really thought, like, ‘this is it, like, I’m going to deteriorate until I’m gone.’ I’m really happy that that didn’t happen.”

Dr. Jesse Greiner, medical director of the Post-COVID-19 Recovery Clinic at St. Paul’s Hospital in Vancouver, said the symptom profile is very diverse, including, headaches, predominant brain fog, difficulties with cognition … and all the way down to paresthesia as numbness and tingling in the toes.

“I think the virus does something to the inner workings of the body in a way that we don’t yet totally understand. And it’s really debilitating for patients.”

Dr. Jesse Greiner is the medical director at St. Paul’s Post-COVID-19 Recovery clinic in Vancouver. He is also one of Katy McLean’s physicians.

During McLean’s relapse, she said she lost her ability to walk because she was having neurological symptoms that were affecting her legs.

In June 2021, she began improving but is still reliant on a walker to get around.

“I started transitioning to a four-wheel walker, which is what I use now when I go to appointments. I’m so grateful to have been able to make that progress. And if I’m walking a short distance, I can use a cane now,” McLean told Global News.

Do vaccines help with Long COVID?

“It was very scary and why I call it one of the worst days of my life,” said Ken Borg, who got COVID-19 in March 2020.

Since the 60-year-old got the disease so early on in the pandemic, he never got tested but had all the symptoms. Borg said he eventually got a COVID-19 diagnosis over the phone from the doctor.

“It was probably the sickest I felt in my life,” he said, adding, “I had heart palpitations every day.”

Every day was difficult for Borg. He had to admit to himself he was a long hauler. But in May 2021, Borg got his first dose of the COVID-19 vaccine and he said he noticed he felt way better.

“A lot of things improved,” Borg said.

Over the last year, experts said there have been a number of anecdotal stories about long haulers getting better after receiving the vaccine but they have also heard the opposite too.

“There’s a small number of patients that feel like the vaccine has cured them of their illness, although that’s not persistent in all cases, either,” Dr. Greiner said. “It’s difficult to say because there’s still so much that we don’t understand about how long COVID works.”

Although Borg is feeling better than before, he told Global News that he is still suffering from a high heart rate and he doesn’t know why.

Brain Fog and neurological changes

Erica Taylor had similar symptoms to McLean after she got sick with COVID-19 in June 2020. Now, more than a year later, her number one issue is her debilitating brain fog.

“I have difficulty sometimes focusing. I have difficulty sometimes coming up with a word that I’m looking for. … Sometimes I can’t see things that are right in front of me. Sometimes I fail to recognize common objects,” Taylor told Global News from her apartment in Atlanta, Ga.

At first, the 33-year-old non-profit lawyer tried to keep working but she was struggling with brain fog and remembering things. She was forced to take about a 10-month leave of absence.

Now, Taylor is back on the job, working from home. She isn’t 100 per cent, so she has had to create a system of reminders on her phone, including one to prompt her to brush her teeth, to help her get through the day.

“I want to be who I was before.”

She runs a program every Saturday where volunteer attorneys are paired up and interview clients. She starts the day the same way,  “I tell them that I have neurological issues that I’m forgetful,” she said, adding, “I still have them come back and ask me questions like, ‘did you mean to send me this?’ ‘No, no, I didn’t. I’m sorry. This was the one I meant to send you.’”

Are more women suffering from Long COVID?

Dr. Igor Koralnik and his team at Northwestern Medicine in Chicago, Ill. are investigating Long COVID and potential causes of the syndrome.

He oversees the Neuro COVID-19 Clinic at Northwestern Memorial Hospital and has seen hundreds of patients since opening the clinic the last year.

“The major population coming to the clinic were younger. They were previously never hospitalized … but thereafter, they developed persistent, lingering and also debilitating neurologic symptoms, including brain fog,” Koralnik said.

“Interestingly, 70 per cent of those patients were women.”

While there are no concrete answers showing Long COVID-19 affects more women than men, Koralnik has a theory that the syndrome might be a form of autoimmune disease. Autoimmune diseases are a condition where the immune system attacks its own body by mistake.

The Autoimmune Disease clues 

“We know that women are more likely than men to develop autoimmune disease, such as multiple sclerosis … and so it is possible that there is a predisposition for these patients to develop the Long COVID syndrome, which may in fact be a manifestation of autoimmune diseases as well,” he said.

According to Canada’s Public Health Agency, about 60 per cent of those diagnosed with COVID-19 reported one or more symptoms more than 12 weeks after initial infection. So, you can imagine how many people will be impacted.

“When we now talk about COVID, we talk about the toll of hospitalization and death. … That is really only the tip of the iceberg,” said Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis, Mo.

“And beneath that tip of the iceberg, we think that is a substantial burden of disability and disease that will last people a lifetime.”

Al-Aly said he turned his attention toward studying Long COVID-19 after reading personal stories about long haulers describing their struggles with the condition.

“That was sort of the eye-opening for me…something is happening here. And really deserves to be investigated and early kudos to them, they actually even named the disease,” he noted.

So, Al-Aly and his colleagues went to work studying more than 70,000 records from the Veterans Health Administration (VHA), who survived COVID-19 for at least 30 days after diagnosis and were never hospitalized. What they found was that some long haulers developed serious chronic conditions that would likely need to be treated for the rest of their lives.

Chronic conditions and Long COVID-19 

“What we now know, we know that COVID 19 can cause, or can lead to increased risk of new-onset diabetes and new-onset kidney disease. And what we know about these diseases that are really chronic diseases that don’t go away,” said Al-Aly, who is also chief of research and development service at the VA Saint Louis Health Care System.

“And the concern is that those ramifications will reverberate in every aspect of our life for decades to come”

Meaning that the burden of COVID-19 and subsequently, post-COVID condition could have a lasting impact on society and the health system long after the pandemic is over.

That certainly seems to be true for Katy McLean, who can’t work anymore because of her long hauler syndrome.

“For me to try and do a normal activity, there’s a price to pay. So, my body doesn’t have the energy to do activities of daily living,” McLean said.

But she is determined to do her part. McLean is part of a study investigating the condition and hopes her contribution will help lift the veil on this mysterious illness.

“It’s a bit scary because it’s very strange having a novel illness where there’s not a known prognosis. But I think given the situation, it’s the best thing I can do at this point to help. It’s the only thing I can do at this point to help,” she said.

Without any definitive answers, McLean is left to find solutions for herself. She takes supplements daily and sees a physiotherapist to work on her strength.

And while she worries she’ll never heal, McLean remains focused on the small, incremental improvements she makes over time.

“I know we all miss things that are from before the pandemic. But for me, the thing that I miss the most is I was such an avid walker. I just loved going for a long walk and being outside and going for a hike,” she said. “I don’t know if I can do any of those things ever again, but I would be satisfied right now just to be able to walk around the block without major repercussions.”

Suffering from Long COVID? Here is a Canadian support group:  Long Covid Canada 

—

See this and other original stories about our world on The New Reality airing Saturday nights at 7 p.m. on Global TV, and online.