For the first time in Manitoba, a virtual COVID-19 support group is giving long-haulers the chance to share their experiences with each other.
“It’s such a relief to hear from people who are going through the same thing as me,” said Cathy Scofield-Singh, one of 39 Manitoba women enrolled in the virtual support group run by the PMRA’s Pulmonary Rehab Program. Winnipeg Regional Health Authority and clinicians from the Community MyHealth team. .
Scofield-Singh said she felt validated after attending the first session of the Living with Long COVID education and support group on Feb. 15.
She has endured severe fatigue, brain fog and tinnitus for the past two years after suffering an infection “that made it feel like an elephant was sitting on my chest”.
She fell ill after a trip to Britain in the fall of 2019, before COVID-19 tests became available.
She was never able to get a confirmed result; after seeing several specialists, she was told she might have a suspected case of COVID-19. She was accepted into the support group because of her long-term symptoms. The uncertainty surrounding the long COVID makes it especially important to hear from others going through it, she said.
“I know I’m not pretending. So many people just think long haul COVID isn’t real, and when you start talking to other people, you hear their symptoms and they’re the same as your symptoms. , (you think), ‘oh hey, I’m not going crazy!'” the Ste. said a resident of Rose du Lac.
The virtual support group is a seven-week pilot project that involves occupational therapists, physical therapists, respiratory therapists, speech therapists, dietitians, pharmacists and social workers, the WRHA said in a statement. None of the program organizers were available for an interview.
As a therapist and someone who has suffered from long-term symptoms since falling ill in March 2020 (also with a suspected COVID-19 infection), Lynne Pinterics said support groups are essential.
“Groups are the most calming place for people, whether children or adults, because they get that commonality from others – the experience of that, the feelings that go with it,” said she declared. “You are supported and less discouraged.”
After participating in the first virtual session, Pinterics said it would help her with her own healing and her ability to practice mindfulness as a way to manage relapses of her long-term symptoms, which can get worse with age. overwork. Exercise or rest alone does not relieve fatigue, she said, urging the professional development of local doctors to study the long COVID.
“It feels like a bit of a roller coaster,” she said of dealing with recurring symptoms.
Since last fall, she has been involved with other Long Haul COVID-19 clinics through the Pulmonary Rehab Program, which runs in-person clinics in Deer Lodge, Misericordia and Seven Oaks, but this was her first. chance to hear from others who go through.
“It would have been fabulous if I could have had this band a year and a half ago.”
Both women spoke of the frustrating toll that the uncertainty and widespread lack of understanding of long-term COVID-19 has taken on them.
It is not known how many Manitobans have long-haul COVID-19. Dr. Alan Katz is trying to find out.
Katz and a team of about 12 researchers at the University of Manitoba are analyzing anonymized health data that captures the people of Manitoba so they can find out how many infected people develop long COVID, what the risk factors are and the most common symptoms, and what treatments are needed. They expect to have initial data in about three months that could help guide patients, healthcare professionals and policy makers.
“One of my biggest concerns is that there will be a lot of people with symptoms and we haven’t identified the services they will need that we need to start planning for,” Katz said.
This is not a clinical trial – researchers are analyzing data (including with an automated computer algorithm they developed to search through thousands of clinical notes) to find out what kinds of symptoms COVID-19 positive Manitobans have reported to their doctors. They analyze health data from March 2020 to December 2021.
They expect to capture the full extent of long-haul COVID in the province, even in the absence of official long-haul COVID diagnoses. The search does not require long-haul participation, but despite that, Katz said he received 15 or 20 inquiries.
“Obviously there are a lot of people who are having symptoms that bother them and they’re having trouble finding the help they need,” he said. “They are looking for answers.”
Last month, Dr. Joss Reimer, medical lead for the Manitoba Vaccine Task Force, spoke publicly about the effects of COVID-19 on the brain, citing a US study that found that 25% of people who contracted COVID-19 had neurological symptoms, including “cognitive impairment,” — even people who had only mild symptoms of the virus.