Constant migraines. Shortness of breath. Heart palpitations. Chest pains. Back pain. Memory loss. Difficulty concentrating. Fatigue.
Andy Lera wonders if his symptoms will all end tomorrow or continue for the rest of his life. Lera said he has been living with long COVID for more than 29 months. He believes he fell ill with COVID-19 in June 2020 when he checked off nearly all the symptoms on the checklist.
“It has kind of put everything in my life on hold,” he said.
The 47-year-old Yukoner is part of a Yukon government working group formed in spring 2022 to learn more about post-COVID-19 condition, also known as long COVID. The group is made up of health professionals and Yukoners living with long COVID.
Based on the work of the working group, the Yukon government released a webpage that contains resources for Yukoners with symptoms of long COVID; for their friends and families; and for health-care providers.
In a Dec. 2 phone interview, Lera said that he went from climbing mountains to barely being able to get up a ladder and needing a parking permit as a result of his condition. He has taken a major financial hit because he cannot continue working in construction, which is dragging him into debt.
“It has huge effects,” he said.
Lera said he meets people “every week” who may not realize the symptoms they are experiencing could be related to long COVID.
Since learning about a special advisory committee on COVID-19 slide show presentation dated July 2020, Lera believes Dr. Brendan Hanley, the Yukon’s former chief medical officer of health and now-MP, knew about long COVID long before the working group came to fruition, and Lera wonders what action was taken at that time.
“What has been the biggest issue over these years, until the working group started, is that there was zero acknowledgement and zero communication to the public,” he said.
“Over a year and a half ago, I started really pushing the government on this as to why there was nothing out.”
In a Dec. 6 interview, Hanley said the potential for long-term health impacts was emerging as a phenomenon around the time of the committee’s presentation — at a rapid rate considering the virus was only first identified in December 2019.
“That was part of the presentation that was made to us about the current state of evidence at the time, and I think it pretty clearly illustrates that this was something that was flagged as something that might be a consequence of COVID, as we were learning rapidly every day about what COVID is, what it means and what the consequences are,” he said.
“There would be no interest in us not disclosing information.”
Hanley said the notion of long-term consequences — which is better understood for some other viruses — reinforced the government’s earlier strategy to contain the virus at the time through identification, isolation and preventing its spread.
“I think it certainly reinforced our modus operandi at the time, and then, of course, became one of the compelling arguments that we put forth to promote vaccination when we were able to offer a vaccine,” he said.
Hanley acknowledged this is still an “important” and “evolving” area.
“[People] need validation and recognition when they are suffering long COVID or what could possibly be long COVID symptoms, and ideally attached to ongoing care, and this is all in the context, of course, of a shortage of access to primary care, and I think that probably adds to some of the frustration.”
Samantha Henney, communications manager for the territorial department of Health and Social Services, said by email Dec. 6 said the Yukon government first learned about the condition when it was still in the early stages of being researched and understood in Canada and across the world.
On Oct. 17, Statistics Canada put out what it calls the first nationally representative picture of Canadians who experienced long-term symptoms after testing positive for COVID-19 or suspecting a prior infection, based on provisional data from the Canadian COVID-19 antibody and health survey. The results suggest that 14.8 per cent of Canadians who had or thought they had COVID-19 still felt symptoms at least three months after their initial infection.
The Yukon government does not have an estimate of the prevalence of post-COVID-19 condition in the Yukon. In Henney’s statement, the territories were excluded from national surveys that give prevalence estimates. The government is figuring out how to collect this data in a rigorous and representative way.
Henney said the working group will continue to meet to ensure the online resource stays updated with current research and resources.
In a May 20 press release, the Yukon government acknowledged long COVID exists in a wide range of diverse and long-term effects in some people who have been infected with COVID-19 when it announced the creation of a long COVID working group.
“Our government’s top priority remains protecting the health and safety of Yukoners. Supporting Yukoners and their families who are experiencing post COVID-19 condition is an important part of this process,” Minister of Health and Social Services Tracy-Anne McPhee said in a Nov. 25 government release about the new webpage.
“I encourage all Yukoners to explore this new resource and learning about post COVID-19 condition. Reach out for help if you are experiencing ongoing symptoms. Thank you all the members of the post COVID-19 working group for their dedicated efforts into creating this resource. It could not have been accomplished without the critical and meaningful input from the members with lived experience.”
The webpage includes a caveat: it is intended for “information and educational purposes only, and is not necessarily an endorsement by the Government of Yukon” and information may be changed, updated or deleted as research develops.
Charting the Course, the government’s latest roadmap for living and managing COVID-19, does not mention long COVID or post-COVID-19 condition.
Lera said he had hoped the information the working group compiled would’ve come out sooner, noting the process hasn’t moved along as quickly as he would’ve liked.
“It’s been slow,” he said.
“But we’re meeting the objectives.”
Lera said the working group has “just barely scratched the tip of the iceberg.”
He said the webpage is just a start, and getting it better organized is a key next step. He wants this information reviewed by every physician and nurse in the territory.
“There’s very little awareness, and therefore very little resources for people with long COVID,” he said.
Lera remains hopeful that research happening around the world is being transformed into figuring out what kind of treatments work for long COVID.
Lera has tried using vitamins and supplements, acupuncture, osteopathy and physiotherapy over the course of his journey with long COVID.
“It seems like everything kind of helped a little bit,” he said.
“But it’s hard, too. All of these things cost a lot of money.”
Now Lera is trying low-dose Naltrexone.
A clinical trial for the drug, which ends in December, is being run out of the Complex Chronic Diseases Program at B.C. Women’s Hospital and the post-COVID-19 recovery clinics in British Columbia. In the study description, Naltrexone could help to reduce pain and inflammation and improve well-being and immune function. The study is intended to demonstrate whether low doses of the drug could benefit a large number of people with post-COVID fatigue syndrome.
In a COVID-19 briefing on Dec. 2, Dr. Tedros Adhanom Ghebreyesus, director-general for the World Health Organization (WHO), said WHO estimates that at least nine out of ten people in the world now has some level of immunity to SARS-CoV-2 due to prior infection or vaccination.
“We are much closer to being able to say that the emergency phase of the pandemic is over — but we’re not there yet,” he said.
“Gaps in surveillance, testing, sequencing and vaccination are continuing to create the perfect conditions for a new variant of concern to emerge that could cause significant mortality.”
In a WHO COVID-19 briefing on July 6, the director-general said each wave leaves more people with long COVID.
“This obviously impacts individuals and their families, but it also puts an extra burden on health systems, the wider economy and society-at-large,” he said.
Contact Dana Hatherly at email@example.com.