Few resources for COVID-19 long-haulers suffering symptoms for months, new app offers hope

A year into the COVID-19 pandemic, the medical fraternity still has no objective measures to help differentiate coronavirus long-haulers from those that have fully recovered from the virus.

Recent research has found that one in three of those who contract COVID-19 can go on to develop persistent symptoms, with studies citing heart, lung and cognitive issues, as well as debilitating fatigue and pain. They've come to be known as COVID long-haulers, and based on these recent statistics, Canada could have more than 200,000 of them at this point in the pandemic.

As long-haulers continue to search for answers, an Ontario doctor is assuring them they are not alone.

Dr. Sonny Kohli, a practicing physician at Oakville Trafalgar Memorial Hospital, said the mobile app, Stronger Together, produced in part by a company he co-founded, will help bring COVID-19 survivors and long-haulers together in an online environment where they can learn from each other. 

"For them to go to a group, people with [similar] symptoms, it just validates their concerns. It makes them realize that no, you're not crazy, other people are having the same symptoms and you're not alone," Kohli said.

"That kind of peer support is so invaluable, but doctors spend 10 minutes with you and off you go and all you have left is … the internet, which could be filled with misinformation.

"It's important to go to a safe place where you can have that peer-to-peer support and talk to people who are suffering from what you are suffering from, and also find resources that have been vetted by professionals," said Kohli, who is also an assistant professor of medicine at McMaster University.

Digital health companies, Curatio and Cloud DX have combined efforts to create peer-to-peer communities on the Stronger Together app to support COVID-19 patients and long-haulers with their unique health needs.

Kohli is a co-founder and chief medical officer at Cloud DX.

CEO of Curatio, Lynda-Brown Ganzert, said COVID-19 Survivors and Long-Haulers community offers a secure and private online environment to connect with other survivors and access curated information from experts, evidence-based programs, coaching, virtual visits and daily tracking and monitoring tools.

"In the stronger together app there are 13 different programs and communities that you could choose from, so you choose what's relevant to you and have a personalized experience within that community," Ganzert told CBC News.

"There're groups, one-on-one chats, coach communications, events and you get to make your own private circle and curate who is in that private circle of yours."

The app is available in 102 countries and more than 20 languages, allowing COVID-19 survivors from around the world to connect on the platform, share resources and expand their own support systems.

"COVID-19 is a completely new territory within the health-care space, meaning patient and survivor resources are still extremely limited," Ganzert said. 

"Many people are looking at unaccredited resources online and this can aid in the spread of misinformation."

'I thought I was gonna die'

COVID-19 long-hauler Susie Goulding says she was still suffering from severe neurological and gastronomic issues related to the novel coronavirus for nearly a year.

The Oakville, Ont., resident told CBC News that she has had dozens of symptoms. These include:

• Ear, nose and throat infection.
• Lesions all over her tonsils.
• Loss of sense of taste.
• Burning in her ear.
• Difficulty swallowing.
• Stomach cramps.
• Upset stomach.
• Diarrhea.
• Terrible gas — belching all the time.
• Brain fog.
• Memory loss.
• Extreme fatigue.
• Chest pain.
• Erratic heartbeat.

"I thought I was gonna die. One night I called my doctor and said, 'I think I'm gonna die,'" Goulding told CBC News.

"When I was sleeping I would wake up and feel like my heart is going to explode. "This was far worse than anything I've ever experienced. I just kind of learn to live with the symptoms."

Golding said she is a single mom and she is not getting any help. 

She said while she wants to get back to work, she is unable to even stand up for a long period of time.

"We're left with nothing. We don't get any help. We deal with all these things on our own," Goulding said.

"The government has turned a blind eye to us. They're busy with the vaccine rollout and they are busy trying to put out fires and dealing with the hospitals … it's like they are in triage mode and they have left us in the waiting room."

Goulding said a lack of answers from health officials forced her to create a Facebook group — COVID Long Haulers Support Group of Canada — in hopes of connecting with other long-haulers. The group currently has nearly 12,000 members.

Recently CBC Marketplace asked more than 1,000 Canadians with lingering COVID symptoms about their access to care. More than 60 per cent of COVID-19 long-haulers said in the questionnaire they aren't getting the medical treatment they need and many others reported they are stuck paying hundreds of dollars — some spending $10,000 or more.

Health Canada: Not enough data available

In an email to CBC News, Health Canada said there is currently not enough data available to definitively determine how common long-term effects of COVID-19 are, the spectrum of complications that may occur, or who is most at risk of developing complications.

It says the Public Health Agency of Canada is actively monitoring the latest research on the potential long-term health effects and symptoms of COVID-19.

Additionally, Health Canada said the delivery of health care is the responsibility of the provinces and territories, and the federal government remains committed to supporting them in delivering high-quality health care to all Canadians, particularly in response to the pandemic.

Meanwhile, Anna Miller, senior communications advisor with Ontario's Ministry of Health said while not specific to COVID-19 patients, the ministry has made significant new investments in the health system to help ensure that COVID-19 patients, and the community continue to access the care they need during this unprecedented time.

Doctors still baffled by COVID-19

Kohli said even though COVID-19 has been around for a year, doctors are still learning about the disease.

"More and more people are coming out and expressing symptoms that are unusual that doctors are still baffled by and trying to understand," he told CBC News.

"So, it's key that the medical community rally around this, admit that we don't understand this, collect information objectively and give patients an opportunity to speak about the symptoms without minimizing their complaints, and sometimes that requires a peer-to-peer group.

"The COVID-19 Survivor and Long hauler community was created to meet this need. Those identifying with this group can now turn to a private online community to share their stories and seek answers, and to find updated information and support from medical experts and health coaches on their unique symptoms," Kohli said.