The history of the Long COVID Connect program
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In the beginning...
In 2021, founder of the program Jessica DeMars recognized a need to get information as quickly and efficiently as possible into the hands of the increasing amounts of people dealing with long term symptoms of SARS-CoV-2 infections. Basically, she realized she couldn't possibly help everyone individually as she faced increasing requests for support. At that time many other health professionals were not quite on board in their knowledge and understanding of Long COVID, and were unable to provide timely and safe management.
This meant many people were left without adequate support and had to seek out their own care, often recieving the wrong advice on how to manage symptoms. So Jessica connected with with Rosie Twomey, PhD, a researcher with experience in fatigue-related conditions and Rachel Goldenberg, a vocal health specialist to develop the Breathe, Speak, Pace program. Jessica and Rosie had partnered earlier in a study that identified Post Exertional Malaise in individuals with Long COVID. Jessica and Rachel had already been working together on group programming for people with lung disease, and realized the group format might be helpful for people with Long COVID.
The initial program, titled Breathe, Speak, Pace focused on self management strategies of rest, breathing, and vocal health (cough and vocal changes were primary symptoms of early Long COVID strains), and was delivered virtually over Zoom to residents of Alberta.
This meant many people were left without adequate support and had to seek out their own care, often recieving the wrong advice on how to manage symptoms. So Jessica connected with with Rosie Twomey, PhD, a researcher with experience in fatigue-related conditions and Rachel Goldenberg, a vocal health specialist to develop the Breathe, Speak, Pace program. Jessica and Rosie had partnered earlier in a study that identified Post Exertional Malaise in individuals with Long COVID. Jessica and Rachel had already been working together on group programming for people with lung disease, and realized the group format might be helpful for people with Long COVID.
The initial program, titled Breathe, Speak, Pace focused on self management strategies of rest, breathing, and vocal health (cough and vocal changes were primary symptoms of early Long COVID strains), and was delivered virtually over Zoom to residents of Alberta.
PHASe TWO...
The Breathe, Speak, Pace program did have some growing pains as we as facilitators tried to organize the program in a format that met participants where they were (addressing things like energy depletion and cognitive dysfunction). At this time, Rachel also left the program to pursue a master's degree in Speech Therapy (yay Rachel!). We also noticed a shift in the presentation of Long COVID symptoms: there was less breathlessness, cough and voice issues and more fatigue and dysautonomia.
Over the next few years, the BREATHE program (as it was now known) altered it's format and contact with each successive outing. Reducing session numbers per week, changing content to reflect the needs of individuals, to recording content to be reviewed before sessions to allow for more live discussions and to reduce cognitive exertion. We brought in new team members - physiotherapists and an occupational therapist - all with lived experience. We added in support group sessions after the program ended and a bi-weekly restorative class. Our community of participants was growing.
Over the next few years, the BREATHE program (as it was now known) altered it's format and contact with each successive outing. Reducing session numbers per week, changing content to reflect the needs of individuals, to recording content to be reviewed before sessions to allow for more live discussions and to reduce cognitive exertion. We brought in new team members - physiotherapists and an occupational therapist - all with lived experience. We added in support group sessions after the program ended and a bi-weekly restorative class. Our community of participants was growing.
And then Covid went away...
Well no, actually, it didn't. But we were told it did. People stopped talking about it. Stopped testing for it. And so people stopped getting Long COVID. Well no, actually, they didn't. But now no one knows if they have Long COVID...they just know they are sick and don't know why.
Because no one knows they have Long COVID, fewer people are reaching out for support (they may not even know to look for it).
Once again we are pivoting. With a new name, Long COVID Connect, our focus is now on creating connections for people living with Long COVID (or whatever post infectious illness they may have). Connecting with information based in science and experience (learning from those who came before). Connecting with strategies that can help ease the burden of living with Long COVID. Connecting with others to reduce the social isolation this illness often delivers.
The content of the Long COVID Connect program is now easily available to members of our community. Access videos, manuals and resources anytime to help you learn strategies to navigate this difficult journey. Join in our Zoom based meetings and events to connect with others, ask questions and share experiences. We strive to provide up to date information on the quickly changing research landscape. The Long COVID Connect community provides a safe space for you to find community and support.
Because no one knows they have Long COVID, fewer people are reaching out for support (they may not even know to look for it).
Once again we are pivoting. With a new name, Long COVID Connect, our focus is now on creating connections for people living with Long COVID (or whatever post infectious illness they may have). Connecting with information based in science and experience (learning from those who came before). Connecting with strategies that can help ease the burden of living with Long COVID. Connecting with others to reduce the social isolation this illness often delivers.
The content of the Long COVID Connect program is now easily available to members of our community. Access videos, manuals and resources anytime to help you learn strategies to navigate this difficult journey. Join in our Zoom based meetings and events to connect with others, ask questions and share experiences. We strive to provide up to date information on the quickly changing research landscape. The Long COVID Connect community provides a safe space for you to find community and support.