A well-known Sudbury woman has become a face and a name for one of the newest and most frustrating medical conditions in Canada: Post-Acute COVID-19 Syndrome (PACS), also known as long COVID.
Kim Fahner is an accomplished writer, author, poet and educator who has been struggling with long COVID for almost eight months. Fahner said she developed adult asthma some years back, when she was a younger woman.
"So I knew that my lungs might be an issue if I ever got COVID and I followed all the rules and I was double vaccinated," Fahner said.
But as things turned out, Fahner became infected. That was in November, 2021.
"So it's kind of like you're fighting a battle inside your own body. And it's affecting your physical and mental well-being at the same time. And that's the difficulty of what I am going through."
Fahner, who described herself previously as a strong woman who was used to hiking and swimming, admitted she is not that person anymore. In Fahner's personal blog, she writes about The Before Times, a reference to pre-pandemic days when she could do most ordinary things, go for a walk, or take a morning swim or climb the stairs without running out of breath.
Headaches, fatigue, dizziness and the sense that some friends and acquaintances don’t believe her situation are part of her new reality.
One of the things that significantly impacted her life was losing the senses of taste and smell. When asked how this affected her enjoyment of food, Fahner's reply was stark.
"I don't think the word ‘enjoy’ really comes into play anymore, like if you speak to people with long COVID. You can't taste or smell. It's that I eat and drink as fuel," she said.
Fahner takes food for nutrition only. She can tell if it is hot or cold or if it has texture. Nothing else.
"I try to remember the taste of coffee. I love it. I make it every morning, in the very early morning hours, and imagine what I remember of its essence: the smell, how it used to fill a room, and the taste, after it has brewed. These things are gone."
Fahner said she is striving to get better, to feel better.
"I'm trying to be healthier; to see if I can gain some kind of, I don’t even know what the word is. I want to get back to as normal as I can be with my body. So I'm really working with my pharmacist, my doctor, and my massage therapist. I have a fantastic personal trainer, Michelle Munro."
Fahner also said she doesn't argue with the naysayers, the ones who say that COVID is a hoax and that the vaccines are of no help. She said in her blog that she would rather not argue. She maintains that being vaccinated has meant her situation was not as bad as it might have been.
"I know that my double vaccination means that I won’t be hospitalized or die. The people I talk with on my health care team tell me that," she wrote.
Fahner is not alone with her condition. There are no clear numbers yet on how many people might have long COVID but a recent article in the Canadian Medical Association Journal (CMAJ) said that more is being learned as time goes on, and that long COVID might affect up to 20 per cent of all COVID cases in Canada.
"A systematic review by Canadian researchers identified more than 100 symptoms associated with long COVID. Some of the most common include fatigue, general pain, sleep disturbances, shortness of breath, cognitive impairment, and mental health symptoms. Researchers also found that nine per cent of people were unable to return to work after three months," said the article by Diana Duong.
Duong also remarked on the number of Canadians who might have long COVID.
“The World Health Organization (WHO) estimates that 10–20 per cent of people who have COVID will develop post-COVID conditions, which would mean that upwards of 388,000 people in Canada have developed long COVID (to date, 3.8 million people in Canada have had COVID-19).”
Health Canada published a discussion paper in June 2022 outlining that many Canadians are suffering Long COVID symptoms well beyond the six-week period for the acute level of illness and the 12-week period that is considered the usual time span of most symptoms.
Currently, the estimates on how often people experience post COVID-19 conditions are inconsistent, said Health Canada. This is due to differences in:
-how symptoms are measured.
-what symptoms are examined.
-the number of participants in the study.
-the length of time the patients were followed.
-which populations are included in the study (hospitalized versus outpatient versus undiagnosed or asymptomatic).
Health Canada also said the Post COVID-19 condition typically appears in adult patients but there is emerging evidence that children may also be developing persistent and chronic symptoms after a COVID infection.
"There is still a lot that we don’t know about post-COVID-19 condition in children. The prevalence of this condition in children is not yet well established, with high variability in estimates being observed from only a small number of studies. These estimates will become more precise as more studies are conducted and new evidence emerges. More research is needed on the longer-term symptoms after a COVID-19 infection in children and adolescents," said Health Canada.
The Ontario College of Family Physicians has published a Post COVID guidance document that discusses the symptoms people might have along with suggestions for treatment, follow-up visits and monitoring.
The college also provides information for assessment and management of the post COVID-19 condition, with content from the Centres for Disease Control (CDC) in the United States.
The Ontario Science Table said that long COVID needs more study to fully quantify the impact of the condition and to develop strategies for prevention and treatment.
"A conservative estimate suggests that 57,000 to 78,000 Ontarians had or are currently experiencing the post COVID-19 condition, although prevalence estimates can vary widely depending on the case-definition applied. Vaccination is likely protective against development of the post COVID-19 condition." said the Science Table in its latest Long COVID discussion paper dated September 2021.
"More research is required to develop a consensus definition of the post COVID-19 condition, understand risk factors including the role of viral variants, quantify the impact on specific populations such as children, and develop strategies for prevention and treatment."
Public Health Ontario (PHO) followed up on the Science Table findings and said it is actively monitoring COVID-19 and the evidence on the prevalence of PACS (long COVID), PACS symptoms by organ system and risk factors for developing PACS. The information was published in a 49-page report, dated April 2022.
"The health care system needs to understand PACS in recovering patients. Knowledge of the risk factors associated with the development of PACS may be able to assist with following individuals at risk of further morbidity and direct resources appropriately," said PHO.
The report concluded that "approximately 50 per cent of patients with COVID-19 may experience PACS." It also said the most commonly reported after effects included a decreased quality of life, impacts on respiratory functions, energy levels and mental health.
The report further suggested that care for long COVID patients "will likely place added stresses on the health care and social support systems, including increased emergency department visits, outpatient care, inpatient care and rehabilitation."
On the local level, Public Health Sudbury and Districts (PHSD) said it does not track or have access to data pertaining to cases of long COVID-19.
"We recommend that individuals with COVID-19 speak with their health care provider if they are concerned with their symptoms or have any further questions," PHSD said in an email to Sudbury.Com.
The health unit said area residents should still take precautions to avoid becoming infected.
"Public Health Sudbury & Districts continues to strongly recommend the use of multiple layers of protection to protect against COVID-19. This includes layers such as vaccination, continued mask use, practicing physical distancing, handwashing, staying home when ill and self-screening.”
Len Gillis covers health care and mining issues for Sudbury.Com