‘There is a lot of confusion in me’: COVID-19 ‘long-haul’ people suffering from neurological symptoms months later

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TORONTO – A growing number of so-called COVID-19 ‘long-haul’ people who believe they have the disease before tests became widely available are complaining of new neurological symptoms, including confusion, problems with concentration and memory loss that persist for weeks or even months after their initial illness. Ruth Castellanos says she developed an unnerving tremor in her hands after suspected COVID-19 infection in mid-May

“I am shaken from my sleep and feel like my body is vibrating at night,” Castellanos said in an interview with CTV News.

Castellanos, who lives in Troy, Ont., Said she was no longer able to work as an instructor at the university because the tremors are just one of the disturbing neurological symptoms she suffers from.

Once fit and healthy, Castellanos now describes days when she is confused and has trouble reading.

“I’ve been through a lot of brain fog and that’s what sometimes happens to stutter. I lose my train of thought. I am confused on reading. Even simple instructions become difficult and frustrating. I have to read it again, ”said Castellanos.

She says doctors don’t know what is causing her neurological symptoms or how to help her.

“Not only am I scared of the unknown, but I’m scared now of what my symptoms are, and there is a lot of confusion inside me,” Castellanos said.

She worries that brain fog and tremors will become her “new normal”.

“It was very debilitating, and it was very trying for me as a person, not to mention my body,” said Castellanos.

But Canadian long-haul patients like Suzie Golding say it has been difficult to get recognition or help from doctors.

Oakville, Ont. A resident said contracting the coronavirus was “a life-changing experience” for her. She says she has suffered from short-term memory deficits, brain fog and fatigue since developing what appeared to be COVID-19 in March. She is unable to work as a floral designer and the single mom is doing her best to raise her son while battling his illness.

“I really live my life on a very basic level, trying to get through each day with a lot of difficulty,” Goulding said. “It’s terrible. ”

Hoping to bring some relief to other long haulers like her, Goulding has launched an online group called COVID Long Haulers Support Group Canada. The support group has over 28 hundred members and the number is growing.

“A lot of people have doctors saying, ‘It’s just anxiety and we can’t help you. There is nothing we can do. You’re just anxious, ‘and really dismissing the fact that … [this] is something happening, ”Goulding said.

The group is also calling on the federal and provincial governments to provide more help to those who develop these debilitating neurological symptoms.

“We need rehabilitation. We need COVID care clinics set up for us so that we don’t have to wait in the emergency department for six to eight hours to be told they can’t do anything for us, ”Goulding said.

CURRENT STUDIES TO SEEK ANSWERS

In two Ontario laboratories, Canadian researchers are focusing on this group of patients.

Dr Adrian Owen, professor of cognitive neuroscience at Western University in London, Ont. suspects that the COVID-19 long-haul problem may be bigger than initially thought.

“This is something that is happening. If these problems are long term or permanent, we have a very, very big societal and economic problem on our hands, ”Owen said in an interview with CTV News.

To help address the problem, Owen is part of a team of Canadian neuroscientists who launched the COVID-19 online brain study – the largest project in the world to examine “the disease’s” direct and indirect effects on the brain”.

The study, launched by Western University and the University of Toronto, provides online testing to 50,000 post-COVID patients around the world over the course of a year to measure their brain function.

Owen explained that the tests are more like online games that last about a minute and a half and assess brain function, including memory, focus, and problem-solving skills.

“Look at all of this information together and be able to determine how COVID-19 affects cognitive function and whether it affects some people more than others,” he said.

Owen hopes to get results from the study in early fall to better understand the effects of COVID-19 on the brain and find ways to help those suffering from neurological symptoms.

In Hamilton, McMaster University scientist Dr John Connolly is also examining the impact the new coronavirus can have on brain function.

“Based on preliminary research published around the world, it appears that the virus is able to cross the blood-brain barrier, directly attacking the brain,” Connolly wrote in an email to CTV News. He is president of cognitive neuroscience of language at McMaster.

“This means that many of the complications of the disease, such as lung failure and other organ failure, can be due to brain dysfunction as opposed to the virus directly attacking these other organs. ”

Connolly’s lab has partnered with neurotechnology start-up McMaster VoxNeuro and will use electroencephalogram (EEG) neuroimaging to assess brain function over time.

Connolly said enrollment of patients into the study is expected to begin soon.

“As we specialize in cognitive health and COVID has been shown to have lasting neurological consequences, we are able to quantify it and provide data that differentiates true cognitive decline from perceived decline due to symptoms caused by situational factors, such as stress, general fatigue or mood, ”Connolly said.

He added that the aim of this study is to better understand which types of patients are most vulnerable to neurological symptoms and which medical interventions are most effective for treatment.

Researchers will be able to draw conclusions from the study in a year, but Connolly said they would likely start seeing trends in the data within three to six months. However, if more long-haulers participate in the study, results and possible treatments may come sooner.

“The more patients we can test and the faster we can test them, the faster we can get definitive answers to these questions,” Connolly said.

While these symptoms may only affect a minority of COVID-19 patients, Connolly said reliable neurocognitive assessment procedures would be essential to accurately assess cognitive abilities in active and post-COVID patients and to monitor their recovery. .

“With the prospect that our world will not return to normal, and that instead we will be living in a post-COVID world from now on, we need to understand what we are facing,” Connolly said.

“Not just in the short term to alleviate mortality, but to ensure that life beyond COVID is healthy and meaningful for its survivors. “

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