People struggling with long COVID face increased stigma, new Edmonton study shows

Edmonton physician Dr. Daisy Fung stopped playing hockey twice a week after developing long COVID. 

After first having COVID-19 in March of 2020, she developed myalgic encephalomyelitis, which is commonly known as chronic fatigue syndrome, and post-exertional malaise.

Her symptoms, which include severe fatigue and muscle aches, worsen about a day or two after intense physical or cognitive activity.

She has also given up playing badminton and tennis and reduced the number of hours she works so she can function as a doctor and a parent.

When Fung posted about her long COVID symptoms on social media, some people were supportive, but others, including fellow medical professionals, told her she was actually struggling with burnout or a mood disorder.

"It was very upsetting to hear that, to say the very least, from people who care for patients with chronic illness," she told CBC News on Monday.

Fung said she feels validated by the results of a new peer-reviewed study published by University of Alberta researchers in the Lancet's eClinicalMedicine. 

Dr. Ron Damant, the study's lead author and a physician and U of A professor in the department of medicine, developed a 40-question questionnaire to identify and measure the stigma associated with what the World Health Organization calls "post COVID-19 condition."

Nearly two-thirds of the 145 people who fit the study's criteria and completed all the components were women and the participants' ages ranged from 22 to 80.

The researchers determined that the questionnaire did help identify patients with increased stigma — and it also helped show how stigma was affecting people with long COVID.

"It was comforting, in a way, to know that I'm not alone," said Fung, who participated as a patient in the study.

The study found that long COVID patients with higher levels of symptoms were more likely to have higher stigma levels than people who were relatively symptom-free. 

It also found people who reported high levels of stigma had reduced quality of life. These respondents had reduced perception of social support and reported experiencing more loneliness. 

"This study and others that are being published from elsewhere in the world will help increase awareness that long COVID is associated with stigma and that stigma associated with long COVID or other conditions can negatively impact health," Damant said.