Leah Noster’s life has changed dramatically since her COVID-19 diagnosis in December, and she’s not sure she’ll ever be the same.
“It’s been a terrible, terrible journey,” she said.
“I don’t even work an hour a day, to be honest with you, because I just can’t.”
Seven months after contracting COVID-19, the once high-energy, Calgary-based financial services marketing director is still struggling with a list of symptoms including breathlessness, hair loss, sleep troubles, voice problems and extreme fatigue.
“There’s some of us that — granted we didn’t end up in the hospital, we didn’t have tubes coming out of us — but we’re still sick. And we’re still trying to move on. And we’re still trying to live,” she said.
Outdoor walks that she used to do easily and briskly, can’t be done. On days when she’s feeling good enough to attempt activities such as cleaning her condo or washing her car, she ends up crashing.
“For the next two days I can’t move,” said Noster. “Accepting that this has happened to me has been a really, really difficult thing for me.”
University of Calgary post-doctoral researcher and exercise physiologist Rosie Twomey is trying to raise awareness about chronic fatigue and other less well-known symptoms associated with long COVID after encountering many patients like Noster who are exhuasted and struggling to find the right care.
“It’s as severe as I have ever seen in my work with people with chronic fatigue after cancer treatment,” she said.
It can be life-altering, and it’s not something that should be dismissed.– Rosie Twomey, U of C researcher
Twomey led a study (which is published as a preprint and has not yet been peer reviewed) in which more than 200 people from Canada, the U.S. and Europe with long-term symptoms were surveyed.
“The overwhelming majority of people who took part … have chronic fatigue, many for more than six months and up to a year … and this fatigue is at least as severe as fatigue in several other chronic diseases,” she said.
“It can be life-altering, and it’s not something that should be dismissed.”
Twomey said many respondents also experienced a phenomenon known as “post-exertional malaise,” in which symptoms get worse after physical or mental exertion.
“There’s quite often a move to immediately go to exercise as a first point of treatment for people with long COVID, but actually its really important to be careful you’re not making symptoms worse.”
The study has limitations, Twomey cautioned, because participants self-selected to take part.
“So we have to be cautious when we talk about the prevalence of these symptoms. My main aim was to identify this was really severe and that a large proportion of [long COVID] patients seem to be having these types of issues,” she said.
‘Just trying to survive’
The research reflects what Calgary psychiatrist Dr. Eleanor Stein has been seeing as she treats people with long-haul COVID in her private practise.
“They’re off work. They’ve had to quit all of their activities. They’re just really trying to survive,” Stein said.
While other studies have looked at the role fatigue plays, she said few have examined post-exertional malaise.
“To have a study come out … showing that for many people this is a very serious condition, that they have post-exertional malaise … which really prevents them from moving forward and using exercise or normal rehab strategies to get better, I think that’s very important.”
Twomey said clinical trials will be needed to determine the best way to treat long COVID. But she hopes her research will highlight the extreme fatigue people experience and the need to focus on pacing and monitoring through their rehabilitation.
“It’s very distressing for patients for sure and it can be incredibly isolating as well … it can almost have a devastating effect on people’s overall quality of life.”
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