When Tanaeya Taylor became infected with COVID-19 in March of 2020, she never imagined she’d still be struggling with the effects two years later.
Three months after first contracting the virus, Taylor found herself battling dizziness, severe motion sickness, numbness on the right side of her body, chest pain and pressure, ongoing rapid heart rate (tachycardia), tremors, and extreme, overwhelming fatigue.
“Even lifting my arms or lifting my cell phone was too tiring. I was so exhausted. That was probably the scariest thing for me because I thought I was dying, literally, because I just could not stay awake,” Taylor said in an interview.
“It felt like I was just always in fight or flight mode, so it hasn’t been fun. Then on top of that, I have brain fog which is my longest lasting symptom. Some of the other things have cleared up relatively. I am able to get off the couch and get out of bed now.”
The 25-year-old Halifax resident is one of an unknown number of people living with long-haul COVID, also called post-acute COVID-19 syndrome or long-COVID.
‘My brain is slowed down’
Before contracting the virus, Taylor was active and healthy. She’d hit the gym six days a week and often worked two jobs, seven days a week.
Now, she can’t work at all.
“The brain fog and the neurological symptoms are what’s been lasting for me the most and because of those, I still can’t work, I still can’t really drive on my own,” Taylor said.
“The worst out of everything that I’ve dealt with, because it’s still going on, is that I don’t feel fully alert. I feel drunk. I haven’t found a better way to explain it. I literally feel like I had too much to drink. I just feel out of it. I know I’m here, but it’s like my brain is slowed down.”
She also suffers from vestibular migraines, motion sickness that can come on simply from turning her head too fast, and significant discomfort when entering a brightly lit, busy grocery store.
When it comes to dealing with lingering post-COVID neurological symptoms, Taylor isn’t alone.
‘Mass disabling event’
The results of a Canadian survey report released last week on the negative brain health impacts of long-COVID led the founder of the COVID Long Haulers Support Group Canada to call it a “mass disabling event.”
“The direct and indirect effects of COVID on the brain are disconcerting for the thousands of Canadians living with Long COVID. Multiple reinfections are cumulatively damaging the most vital organ in the body, the brain,” Susie Goulding said in a media release.
“Because of these effects Canadians are suffering great health loss, are unable to work and in need of support. We are deeply concerned the pace of science is not meeting the needs of rapidly growing numbers of disabled Canadian COVID Long-Haulers. This is a mass disabling event and the funding must meet the needs.”
The survey — open from March 23 until April 13 — was prepared by non-profit corporation Viral Neuro Exploration (VINEx) and distributed by the Canadian COVID long-haulers support group and Neurological Health Charities Canada (NHCC).
Responses were received from 1,050 long-haulers from nine provinces and one territory.
Significant brain health impacts
More than 80% of survey respondents described long-COVID as having a negative or very negative impact on their brain health. Of those experiencing neurological or psychiatric symptoms, 80% said it negatively or very negatively impacted their daily lives.
Almost 75% of long-haulers surveyed indicated they’d sought medical care for their neurological or psychiatric symptoms.
More than 70% had to take leave from work as a result of living with long-COVID, sometimes for periods longer than a year. Some were forced to leave the workforce entirely.
The survey also found that more than 87% of respondents identified as women, consistent with other findings that women are disproportionately impacted by long-COVID.
More than 60% of respondents were between the ages of 40 and 59.
Only a quarter of survey respondents indicated they were initially believed and received appropriate care after describing their long-COVID symptoms to a health care professional.
“These are some very stark statistics. We need to come together to work with GPs, with specialists, with our medical care system. Our voices need to be heard,” Goulding said in an interview.
“We need to work together to inform policymakers of the needs of long-haulers and people who are suffering from brain injury from COVID, and ultimately we need more funding and more access to reasonable care for people who have brain issues.”
Goulding said what stood out most to her from the survey was the fact that 75% of respondents sought help for neurological issues. Despite it being a primary symptom of long-COVID, she said Canadian patients have the least access to the health care or rehabilitation services required to help treat it.
“Our brain structure is changing, which has been shown in studies…On one health care website, they were giving suggestions to help manage your symptoms and they said to write lots of sticky notes and stay positive,” Goulding said.
“The long-COVID community does not feel as if it is being heard, and more needs to be done to help them navigate, mitigate, the brain health impacts of long-COVID.”
The Oakville, Ont. resident said the online Canadian COVID long-haulers support group she started in 2020 has swelled to more than 16,700 members and continues to grow each day.
“There are large numbers of people who are coming to our group that are now suffering from long-COVID from Omicron, so COVID’s not going away anywhere,” Goulding said.
“People keep joining our group, the numbers keep growing, and there’s less focus on the issue. It’s like they just want it to disappear. But that’s not happening.”
‘Make it a priority’
In Nova Scotia and many other jurisdictions, patients are considered to have long-COVID if they have common, persistent symptoms and a functional impairment due to their symptoms 12 weeks after an initial — or a suspected —COVID-19 diagnosis.
With so many Canadian long-haulers dealing with neurological symptoms–including brain fog–Goulding said accessing speciality care is a challenge.
“There are very few rehab facilities for concussion injuries and they were already maxed out,” she said.
“So now add on hundreds of thousands of people with brain fog to those few concussion clinics that can really handle what’s happening to the brain and offer suitable rehab and something needs to give here. We need to put a focus on this and make it a priority.”
No one knows exactly what percentage of people will go on to struggle with ongoing, persistent symptoms related to their COVID-19 infection to become long-haulers, although in a February interview with the Halifax Examiner, Nova Scotia Health (NSH) said Canadian literature pegged the number at 10%.
When it comes to the number of people who contract the virus who are expected to develop cognitive issues, Dalhousie University researcher Carlos Hernandez-Castillo told the Halifax Examiner in January that estimates range between 13% to 15%.
Hernandez-Castillo is conducting a study to evaluate brain abnormalities in COVID-19 survivors by analyzing a large sample of data gathered from clinical assessments, cognitive scores, and brain magnetic resonance imaging (MRI).
That study is expected to give researchers a better understanding of the mechanisms through which the virus affects our brains, key to developing targeted therapies and medications.
‘Don’t know what’s in store’
Goulding said while such research projects are encouraging, it’s not enough. She is calling on policymakers to make “meaningful and robust research” into the negative brain health impacts of COVID a top priority.
“Canada’s reaction to the pandemic was focused on critical care and now its focus is on rebooting the economy. There are so many issues happening and that need to be attended to that brain health has really just gone under the radar, and we needed to do this survey to show how necessary it is to be looked at,” Goulding said.
“We just don’t know what’s in store for people who have had continuous cases of COVID and are long-COVID and reactivated long-COVID. What’s going to be in store for their future, for their families, for their friends, for their work, for their economic and social well-being? Everything’s affected.”
Goulding said she hears daily from Canadians struggling to access care in health care systems that were already overburdened pre-COVID.
“There are huge, huge waitlists, especially in places out east where they have fewer facilities and especially in the condition of the brain,” Goulding said.
“Moving forward, the solution must fit the needs. It needs to be taken seriously that these issues are happening to the brain, and to women predominantly.”
‘It could happen to you’
For Nova Scotians struggling with long-COVID, Taylor said post-COVID resources like the Integrated Chronic Care Service (ICCS) clinic in Fall River are helpful. While she’s grateful for the clinicians who work there, she said she believes more resources are needed to cope with the demand as the number of long-COVID patients increases.
“The health care system is pretty much in shambles. I had to wait nine months to get an ultrasound of my heart even though my resting heart rate was extremely elevated (125 to 130) and I was having chest pain,” Taylor said.
“And it’s a 285-day wait to see a neurologist…They need to be putting more resources into this…They need more help.”
Taylor, who shares her struggles with more than 13,000 TikTok followers on her channel @longerthancovid, said many of them face similar challenges living with long-COVID. She said surveys and studies like the one released last week are needed to raise awareness about the potential neurological symptoms that can impact people post-COVID.
“A lot of people still think COVID just affects your lungs and then you’re good to go, but from what I’m seeing even in the comments on TikTok, this is a neurological thing and the more studies that are out there, the more people are going to realize this is actually affecting so many more people,” Taylor said.
Taylor wants younger people especially to be aware that they or someone they know could become ill with long-COVID. Her advice is to be mindful of the risks and to take precautions.
“Don’t just assume that it can’t happen to you, even if you’re young and healthy…Many people who are being affected are people who are young and healthy,” Taylor said.
“I was working full time going to the gym six days a week and I thought I was invincible. You’re not invincible. It could happen to you too, so just be mindful.”