Radio — Long COVID: Growing advocacy for recognition, research, and rehab

Susie Goulding is a founder of the COVID Long Haulers Support Group Canada, a group for people with long COVID to support each other, advocate for themselves, and collaborate with researchers. Scott Neigh interviews her about long COVID and about the group’s work, particularly its advocacy for recognition, research, and rehabilitation.

In the early months of the COVID-19 pandemic, nobody knew very much about the disease. The initial picture that emerged focused on respiratory symptoms and on generic signs of viral infection, like fever. And we were told that people who didn’t get sick enough to end up in hospital would get better within a couple of weeks. Right from the start, though, there were people who experienced COVID in ways that looked nothing like that – people like Susie Goulding.

She is 53 years old and lives in Oakville, Ontario. Before she got ill, she lived quite an active lifestyle and worked as a floral designer. When she got sick in March 2020, she didn’t have a fever, she didn’t have the same kinds of respiratory issues that many people have with COVID, and she was never hospitalized. But she lost her sense of taste, and at various points along the way has had gastrointestinal, cardiac, and neurological symptoms.

As it turns out, so have lots of other people. As our experience with the disease has increased, it has become clear that it affects multiple systems in the body. It can cause rashes on the skin, damage to the heart, eye pain and pink eye, delirium and hallucinations, vomiting and diarrhea, brain fog, blood clots, and lots of other things.

Moreover, many of Goulding’s symptoms have persisted right up until today. Some people are calling this “long COVID”, and those who are living with it are sometimes referred to as “long haulers.” The prevalence of long COVID is not currently known, but studies suggest that at least a third of people even with mild cases of COVID have had one or more symptoms that lasted at least six months.

By June 2020, Goulding decided to take things into her own hands – she founded the COVID Long Haulers Support Group Canada, facilitated through a website and a Facebook group. The initial idea was for it to be a way to bring people together to talk about symptoms and experiences. It was meant as a place for people to seek support and share information, and also as a way to develop a sort of collective grassroots sense of the bounds of what COVID can be.

Pretty soon, though, the group’s activities expanded. They did a lot of media work, not only as a way to reach out and let other people with long COVID know about the group, but also to assertively publicize the seriousness of the disease, in the face of those who attempt to minimize it.

The group also began to do advocacy through all of the standard means – meetings with politicians, petitions, online campaigns, and so on. They are making three broad demands.

First of all, they want formal recognition that long COVID exists and a clear definition for it. This is important, because without that recognition, it is often much, much harder for people to access benefits and supports. As well, it means that most official COVID statistics paint a distorted picture of the pandemic because they usually count people with long COVID as people who have recovered.

Second, they want greater investment in research specifically related to the experiences and needs of people living with long COVID. There is some, but not enough, and Goulding says Canada is lagging behind other countries.

And finally, they want funding for the kind of integrated, multi-disciplinary rehabilitation that so many people with long COVID need. Other countries, like the UK, have started funding that sort of thing in a systematic way. But in Canada, the only options are a few very small projects within the public health care system, or fee-for-service clinics that are not affordable for most people.

Goulding said, “It’s just a sad situation, where you think that we have universal health care in Canada here, but we really have to question what’s going on when it’s so fragmented and doesn’t work for everyone. So it’s really not so universal.”

Along with their own advocacy, the group is also part of a new effort to bring patients, health care providers, researchers, and politicians together as a coalition to push for greater attention and resources for long COVID. And they are increasingly becoming involved themselves in networking and collaborating with researchers.

Talking Radical Radio brings you grassroots voices from across Canada, giving you the chance to hear many different people that are facing many different struggles talk about what they do, why they do it, and how they do it, in the belief that such listening is a crucial step in strengthening all of our efforts to change the world. To learn more about the show check out our website here. You can also follow us on Facebook or Twitter, or contact [email protected] to join our weekly email update list.

Talking Radical Radio is brought to you by Scott Neigh, a writer, media producer, and activist based in Hamilton Ontario, and the author of two books examining Canadian history through the stories of activists.

Image: Philippa Steinberg / Innovative Genomics Institute

Theme music: “It Is the Hour (Get Up)” by Snowflake, via CCMixter

This entry was posted in Episode, Radio and tagged , , , , , , . Bookmark the permalink.