New online tool helps people manage long COVID symptoms

Carla Ventura uses MyGuide to help manage her long COVID symptoms.

People in British Columbia living with symptoms of long COVID now have access to MyGuide Long COVID

MyGuide Long COVID is an online tool created by the Provincial Health Services Authority‘s post-COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN) to help patients find best-practice information to self-manage long COVID symptoms. The tool customizes symptom-specific care plans and resources based on information patients enter. It provides personalized long-COVID care and is available online at any time, from any device.

It is available in five languages: Chinese (simplified), Chinese (traditional), English, Punjabi and Tagalog. MyGuide also offers a dark mode to improve accessibility.

B.C. is the only province in Canada to have a network like PC-ICCN.  A partnership between , the provincial Ministry of Health, Providence Health Care, B.C.’s regional health authorities, patients, and research organizations across the province, the Network has been in place since the fall of 2020. Clinical care is delivered virtually to people across the province by the Post-COVID Recovery Clinic, operated by Providence Health Care.

Invisible symptoms can cause a lack of understanding

Living with long COVID is challenging. Symptoms continue months or even years after the initial COVID infection. The invisible nature of many of the symptoms can make it hard for family, friends and colleagues to truly understand the impact the disease is having on an individual. There are dozens of different long COVID symptoms; fatigue, brain fog, and breathlessness are among the most common. With long COVID, symptoms are severe enough to impact someone’s ability to carry out day-to-day activities.

MyGuide provides information to patients experiencing long COVID, based on what they input into the tool.

“I had COVID in October 2022. Months later, I was still exhausted and struggling to manage my usual daily activities,” recalls Cara Ventura, a 40-year-old Vancouver-area woman living with long COVID. “My family doctor did test after test and even sent me to a sleep clinic before they finally heard about the Post-COVID Recovery Clinic.”

A patient at the Post-COVID Recovery Clinic since November, Ventura has found the model of care helpful to manage her symptoms. She attends virtual education sessions at the clinic and refers to MyGuide to complement the information she receives from the multi-disciplinary staff at the clinic.

Long COVID forces active people to suddenly slow down

“It was a shock, quite overwhelming really to be diagnosed with long COVID. I used to be a very active person. I’d even purchased a ski pass for this winter and suddenly, I couldn’t use it,” says Ventura. “The staff at the clinic have been great. They’ve shown me a variety of tools to help manage my symptoms. I’ve had to learn to slow down and pace myself.”

Cara appreciates the intersection of the content found on MyGuide Long COVID and the clinic’s education sessions, which she can’t always attend. “I use MyGuide almost daily to remind myself of some of the tools I can use to help with my symptoms. I like being able to move through the materials at my own pace.”

“I try to attend a couple of education sessions a week but if my symptoms flare up, I may have to miss a session,” continues Cara. “And some days, I struggle to focus on the information the staff is sharing in the session. I like being able to refer to MyGuide to refresh my memory.”

There is still no single medical treatment or medications for long COVID. PC-ICCN supports evidence-based treatments through research. MyGuide reflects data gathered in B.C. and elsewhere that indicates that most people living with long COVID benefit most from self-management tools and strategies.

The Network is also involved in research to better understand long COVID and ultimately, develop treatments and cures. PC-ICCN has partnered with the national Long COVID Web to ensure that B.C.’s collaborative approaches for research and care are consistent with those being implemented across Canada. As part of this partnership, PC-ICCN has received federal funding to make MyGuide available nationally . 

March 15 is International Long COVID Awareness Day.