High levels of stigma experienced by some COVID long-haulers are associated with more intense symptoms, reduced physical function and loss of employment due to disability, according to newly published research from a Lancet medical journal.
Specialists working in Edmonton’s Long COVID Clinic began hearing patient stories suggestive of stigma as soon as the clinic became operational in June 2020. They developed a questionnaire designed to quantify the stigma being reported and compared scores to other measures of health and well-being.
Long COVID is characterized by non-infectious symptoms such as fatigue, cough, shortness of breath, brain fog, joint pain, headaches, diarrhea or rashes that persist for longer than three months following acute infection with SARS-CoV-2.
“We found people with higher levels of stigma had more symptoms, lower function, reduced quality of life, and a greater chance of unemployment due to disability,” said University of Alberta professor Ron Damant.
“It’s a constellation of associations all pointing in the same direction: stigma among long COVID patients is real, and it has the potential to negatively impact patient outcomes.”
Fifteen per cent have long COVID symptoms
Statistics Canada reports 1.4 million people so far report long COVID symptoms. They include stigma study participant Daisy Fung, a family medicine physician and U of A assistant clinical professor.
Fung caught acute COVID in March 2020 and is still experiencing extreme post-exertional fatigue and muscle pain. She is diagnosed with post-COVID myalgic encephalomyelitis, characterized by chronic fatigue. A mother of four and a community volunteer, Fung has had to cut back on her work hours, reduce teaching responsibilities, drop volunteer activities and avoid physical activity that worsens her symptoms.
Fung went public with her experiences of stigmatization–even from other medical professionals–in social and traditional media.
“I’ve had lots of comments asking, ‘Why do predominantly women get this? Or only ‘well-to-do’ women?’ which are inaccurate statements,” said Fung. “It felt accusatory, that it’s mental health or malingering or burnout; things that are not true.”
Learning from other diseases
Damant says stigma is a non-medical factor much like poverty, lack of educational opportunities or food insecurity that can have a major impact on physical well-being. His team’s approach to measuring stigma is modelled on similar tools for HIV, AIDS, epilepsy and leprosy.
The long COVID stigma survey was completed by 145 patients, and results were cross-referenced with information from their medical records, such as six-minute walking distance, clinical frailty score, number of other illnesses and number of emergency department visits.
Patients who experienced stigma were found in all demographic categories, but average scores were higher for women, Caucasians and people with lower educational opportunities.
Patients with higher stigma scores were found to have a higher likelihood of more severe symptoms, anxiety, depression, reduced self-esteem and thoughts of self-harm, and were more likely to be unemployed due to disability.
“People said they were not allowed to return to work, ostracized from friends and family, subjected to unnecessary and humiliating infection control measures, accused of being lazy or weak, or accused of faking symptoms,” said Damant.
The clinic and survey are supported by the University of Alberta and Alberta Health Services. While Damant acknowledges the sample size for the study was relatively small, he says the results are significant because it is one of the first quantitative examinations of stigma in long COVID patients. He hopes to refine the questionnaire and test it in other countries.
Patients “are not faking it”
Damant also hopes attitudes will change as more is understood about long COVID and the impact of stigma on patients. He prescribes non-judgmental listening as the first step toward treating patients who experience stigma.
“People are not faking it, they’re not weak, they don’t need to be treated like they’ve got an infectious disease,” Damant said. “The misinformation, the stereotyping, the labelling, just perpetuate stigmatization, so we need to challenge that.”
Fung agrees, realizing her experience with disease-related stigma is not unique. Being a long COVID patient has helped her build empathy and made her more aware of everyone’s inherent biases.
“It’s been a learning curve that’s helped me start to advocate for other patients who may have chronic illness, including long COVID and especially myalgic encephalomyelitis, who have been ignored for decades,” she said. “Kindness can help mitigate the harm.”
HALIFAX – The Nova Scotia government says it could be months before it reveals how many people are on the wait-list for a family doctor.
The head of the province’s health authority told reporters Wednesday that the government won’t release updated data until the 160,000 people who were on the wait-list in June are contacted to verify whether they still need primary care.
Karen Oldfield said Nova Scotia Health is working on validating the primary care wait-list data before posting new numbers, and that work may take a matter of months. The most recent public wait-list figures are from June 1, when 160,234 people, or about 16 per cent of the population, were on it.
“It’s going to take time to make 160,000 calls,” Oldfield said. “We are not talking weeks, we are talking months.”
The interim CEO and president of Nova Scotia Health said people on the list are being asked where they live, whether they still need a family doctor, and to give an update on their health.
A spokesperson with the province’s Health Department says the government and its health authority are “working hard” to turn the wait-list registry into a useful tool, adding that the data will be shared once it is validated.
Nova Scotia’s NDP are calling on Premier Tim Houston to immediately release statistics on how many people are looking for a family doctor. On Tuesday, the NDP introduced a bill that would require the health minister to make the number public every month.
“It is unacceptable for the list to be more than three months out of date,” NDP Leader Claudia Chender said Tuesday.
Chender said releasing this data regularly is vital so Nova Scotians can track the government’s progress on its main 2021 campaign promise: fixing health care.
The number of people in need of a family doctor has more than doubled between the 2021 summer election campaign and June 2024. Since September 2021 about 300 doctors have been added to the provincial health system, the Health Department said.
“We’ll know if Tim Houston is keeping his 2021 election promise to fix health care when Nova Scotians are attached to primary care,” Chender said.
This report by The Canadian Press was first published Sept. 11, 2024.
ST. JOHN’S, N.L. – Newfoundland and Labrador‘s chief medical officer is monitoring the rise of whooping cough infections across the province as cases of the highly contagious disease continue to grow across Canada.
Dr. Janice Fitzgerald says that so far this year, the province has recorded 230 confirmed cases of the vaccine-preventable respiratory tract infection, also known as pertussis.
Late last month, Quebec reported more than 11,000 cases during the same time period, while Ontario counted 470 cases, well above the five-year average of 98. In Quebec, the majority of patients are between the ages of 10 and 14.
Meanwhile, New Brunswick has declared a whooping cough outbreak across the province. A total of 141 cases were reported by last month, exceeding the five-year average of 34.
The disease can lead to severe complications among vulnerable populations including infants, who are at the highest risk of suffering from complications like pneumonia and seizures. Symptoms may start with a runny nose, mild fever and cough, then progress to severe coughing accompanied by a distinctive “whooping” sound during inhalation.
“The public, especially pregnant people and those in close contact with infants, are encouraged to be aware of symptoms related to pertussis and to ensure vaccinations are up to date,” Newfoundland and Labrador’s Health Department said in a statement.
Whooping cough can be treated with antibiotics, but vaccination is the most effective way to control the spread of the disease. As a result, the province has expanded immunization efforts this school year. While booster doses are already offered in Grade 9, the vaccine is now being offered to Grade 8 students as well.
Public health officials say whooping cough is a cyclical disease that increases every two to five or six years.
Meanwhile, New Brunswick’s acting chief medical officer of health expects the current case count to get worse before tapering off.
A rise in whooping cough cases has also been reported in the United States and elsewhere. The Pan American Health Organization issued an alert in July encouraging countries to ramp up their surveillance and vaccination coverage.
This report by The Canadian Press was first published Sept. 10, 2024.
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