'Long-haulers' is the name coined to describe those who had COVID-19, have largely recovered and are no longer testing positive, but who are still experiencing a myriad of symptoms.
For some, it's months later and they are still feeling the effects, said Susie Goulding, creator of the Facebook group, COVID Long-Haulers Support Group Canada.
The list of common long-hauler symptoms includes chronic fatigue, joint pain, persistent chest pain, shortness of breath and more, according to a variety of studies, including ones from the U.S. Centre for Disease Control released this summer, and several from universities and institutions around the world.
Dr. Anthony Fauci, the U.S. immunologist who has advised six presidents on a variety of global health issues, said in a July COVID-19 webinar, “There’s no question that there are a considerable number of individuals who have a post-viral syndrome that ... can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus.”
Goulding said she and others have been experiencing a sort of brain fog and are finding it hard to go about their normal lives.
In parts of the country with lower COVID case counts, Goulding said some are finding it hard to get proper care because doctors are not as used to treating long-hauler patients.
When the Times & Transcript asked the province about the topic, the health department indicated it was in only the early stages of looking at the issue.
“At this juncture, Public Health cannot determine the number of positive cases that went unaccounted for at the onset of the pandemic, if testing was not pursued at the time,” said Bruce Macfarlane, spokesperson for the Department of Health. “However, there is a client registry currently in place conducting follow-up research on COVID-19 patients.”
Canada's Chief Public Health Officer Dr. Theresa Tam said in a news conference on Tuesday, that further understanding the prolonged longer-term impacts of COVID is being examined by the Canadian Institute for Health Research.
"I think it is important to continue to get more knowledge about this and for clinicians and others to recognize that there's a lot that we don't know about this virus, and that we need to continue to look after and support those who've had COVID-19," she said.
Goulding would like to see a more active approach to helping patients like herself.
She noted that the U.K. and the U.S. have already set up clinics specifically for long-haulers, as has British Columbia.
The vast majority of long-haulers test negative for COVID-19 and there is no specific test to give them for lasting symptoms, said Nam Tran, a director of clinical pathology in charge of COVID-19 testing at the University of California-Davis, in a news release.
According to an article in the peer-reviewed Journal of the American Medical Association in October, some long-haulers have never had a COVID-19 test although they experienced the initial onset of symptoms, a factor which contributed to skepticism when trying to access treatment.
“I know I had it.... I’m not making this up,” said Goulding. “We’re not recovering.”
P.J. Duncan of Saint John believes he had COVID-19 in March when he was in British Columbia. There he was told by Public Health to stay home and self-isolate if his symptoms weren’t severe.
When he first became ill, he hadn’t travelled, Duncan said, mostly leaving the house only to get groceries for others higher risk community members. His case wasn’t bad enough for him to take more than a couple of days off work.
In September, Duncan moved to New Brunswick. After self-isolating for 14 days, he began his new life here.
Since then, he's had symptoms consistent with other long-haulers. Duncan said doctors initially thought he had carpal tunnel syndrome, but treatment didn’t work. “I have pins and needles all the time. It extends up my arm and is like nothing I have experienced before,” he said.
Usual treatments from chiropractors and physiotherapists haven’t worked, he said.
Duncan said he's always been healthy. “I used to be an avid runner and on my spin bike all the time. Since March, I don’t have the energy.”
It was only when hearing and reading about other long-haulers that he began to see similar experiences in the forums and research.
Too often people say the virus isn’t that bad if you are relatively young or healthy, Duncan said.
“I want people to consider another experience, like mine,” he said, where the symptoms "plague on and on.”
When asked what suspected long-haulers should do, Tam pointed to recent studies that look for antibodies in serum or plasma that would indicate someone had COVID-19, but acknowledged these studies are not in widespread clinical use. For now, she recommends patients talk to their physician about exposure history so they can take that into consideration along with symptoms to create a treatment plan.
Dr. Allan Abbass, director of the Centre for Emotions & Health Faculty of Medicine at Dalhousie University, said people who identify as long-haulers fit into several categories: Some experience a variety of left-over problems from the virus and symptoms that include anything from respiratory to organ issues, he said.
Others will experience physical symptoms that are a response to the body being in fear for a long period of time, something also seen in post-cancer patients, he said.
“Some people stay with symptoms for months and months,” he said, adding symptoms are physically occurring, but can be treated differently.
Other cases will be a combination of the two situations.
Some who have never had the virus may nonetheless have physical symptoms from other causes, including fear, he said.
“There is no specific treatment for COVID,” he said. “There is no one-size-fits-all approach.”
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