Transcript
Speaker: Hello and welcome to today's episode of Red Eye. I'm Jane Williams.
Speaker: I'm Jane Williams. This is The Red Eye Podcast, produced at the studios of Vancouver Cooperative Radio. In our episode today, Lorain Chisholm talks with researchers Simran Purowal and Kaylee Byers about the medical gaslighting of long COVID sufferers and gaps in resources and information.
Speaker: The term long COVID emerged in the spring of 2020 on Twitter, when a person with COVID shared their prolonged symptoms, which prior to that point had not been widely reported. A community grew up online of sufferers sharing their experiences and trying to learn what others were experiencing.
Speaker: A new research study looked into how people with long COVID have struggled to get information about their condition. It says patients' experiences seeking information about long COVID can be described as frustrating, uncertain, and complex.
Speaker: I'm joined by the lead researcher of that study, Simran Pirawal, who is research and education coordinator, health and social inequities research theme at Pacific Institute on Pathogen, Pandemics, and Society at Simon Fraser University. And also with us is Kaylee Byers, also from PIPPS, where she is a senior scientist. Hello, Simran. Hi, thanks for the invite. Hello, Kaylee. Well, hello. Likewise, thank you for the invite.
Speaker: Yeah, it's really good to talk to you in a really important subject. Simran, what did you set about to find out with your research review? Yeah, so we initially wanted to explore the information seeking behaviors of unpaid caregivers for people with long COVID. However, when we started that, we found that there was no research to date. And so we shifted a little bit in order to explore the information seeking behaviors and experiences of people with long COVID a little bit more generally.
Speaker: Why did you set out to do this? Why was this important? Yeah, this was a really critical topic. As you know, something that we've explored from Kaylee's research, which she can sort of speak to in a little bit, is that there's currently a pretty big gap in the research literature about where people are accessing information from and how this impacts their access to care and kind of how this intersects with any barriers to long COVID care as well.
Speaker: Well, let's back up a little bit. Around 15 % of adults who have had COVID still have symptoms after three months or more. And I know of people who have had them for a couple of years. Can you sketch out some of the symptoms and health impacts that might show up in long COVID, just to ground us in this conversation?
Speaker: Yeah, for sure. So symptoms of long COVID can be really wide ranging. So it's estimated that there's about 200 symptoms for long COVID and they have multiple impacts on different psychological and physical symptoms throughout your body. We've also noted that there's been a lot of fatigue that people have experienced, elevated heart rate. Those are sort of the key takeaways that we've experienced. And sometimes they can sort of overlap with other preexisting conditions as well.
Speaker: And Lorraine, if I can just jump in here for a quick second. You mentioned this number of 15 % off the top. And I think something that's important to keep in mind throughout this discussion is that we are dealing here with a condition where we have folks who are sharing, oh yes, I think I have long COVID. Maybe I have some of these symptoms. I've had them for three or more months.
Speaker: But there are many people who may have lingering symptoms who will not have sought care or who will not have recognized that they themselves may have long COVID. So the true number is something that we really don't even have a firm handle on. That's I think a really good point to keep in mind.
Speaker: Now the report says that people with long COVID have experienced barriers to accessing care due to what you're calling medical gaslighting in the healthcare system. What does that look like? Yeah, so medical gaslighting is not a new term and it's been documented in other non -visible illnesses like lupus. So medical gaslighting refers to instances where healthcare practitioners dismiss or fall sleep pain patients for their symptoms.
Speaker: And so as I mentioned, this is in part due to the wide -ranging impacts of long COVID and also because of different diagnostic criteria and patients may feel like they're treated less seriously. And so oftentimes practitioners have reduced the condition to having only a psychological basis, which impacts the impacts on other systems too. And I understand that this, as with so many things, is exacerbated by race and gender.
Speaker: Yeah, for sure. So we've seen that medical gaslighting is more common among women and racialized people. And this is especially concerning as women are more likely to experience long COVID. So what does this sort of look like for people who might go to their primary care physician and say, I have these symptoms. What kind of impact does it have if these are minimized or thought to be all in your head?
Speaker: So this can result in stigma and shame about the condition. And as Kaylee previously mentioned, you know, this can impact their propensity or likelihood to seek out other care, which again creates other barriers too. And so because of patients' negative encounters with primary care like family doctors, they've resulted in turning to what we found to be online communities.
Speaker: And so these are present on Facebook. They're open for people with long COVID as well as their caregivers. They act as a source of moral and social support and they are able to promote ongoing research. However, it's really important that patients don't rely only on these online communities because they can be a potential source of misinformation.
Speaker: Well, yeah, that's a very interesting point because when we turn to social media, we used to call that Dr. Google. So I think obviously it's been a source of support and very hard to get information for people. What does that whole landscape look like online? It seems like the long COVID groups are fairly widespread and on different media.
Speaker: Yeah, for sure. So as you previously mentioned, long COVID, this sort of collective movement initially emerged on Twitter. So we've seen a lot of use of the hashtag long COVID or post COVID syndrome. And that's been really prominent on that platform. People are also turning to YouTube, Reddit, and as I mentioned, Facebook for these online communities and promoting ongoing research and offering different management strategies and sort of a source to validate patients' experiences.
Speaker: Let's talk a little bit, maybe both of you can weigh in on the dangers there of misinformation because I know I have people send me things about conspiracy theories and anti -vax information through social media as well. So it seems like there's a potential for this to also be harmful rather than helpful.
Speaker: Yeah, maybe I'll hop in quickly and then Simran can follow up. But I think social media is a powerful tool that the great power comes great responsibility. It is a really powerful tool to connect people. And I think what we're seeing is that it's especially valuable to be able to enter a space and be seen. And I don't mean physically, I mean, just have your story heard and listened to and validated by others. And I think that's
Speaker: a real strength of these groups. But as you mentioned on the flip side of that, there's also some potential to be sharing misinformation. And so as a whole, I think when we're evaluating social media within the context of other information sources, we just need to be mindful that folks are actually accessing relevant information. Really, if that information is not available to them elsewhere in a way that is accessible and relevant to them,
Speaker: then they may be more likely to access information that is not actually going to help their symptoms or may, as you say, be misinformation. Yeah, definitely. I completely agree with Kaylee, and I think sort of just adding to that, when people are applying this misinformation to their health decisions, that can really complicate their ability to sort of handle health care decisions. And we saw this, especially during the COVID -19 pandemic. And while we haven't explicitly explored misinformation about long COVID, that's definitely an area for concern too.
Speaker: Now in your article in the conversation, you recommend a three pronged approach to begin to address the situation. Can you walk us through these three areas of action? Yeah, I think at the outset, it's really critical to engage patients in research and sort of meet them where they're at, understand, consider their research priorities. And keeping this consideration in mind, we first recommend educating physicians on long COVID. And so, you know, this involves
Speaker: ensuring that they understand the diverse symptoms, helping patients manage their symptoms as well, and ensure they're referred to services and supports they need and are available to them. Something else that we noted while conducting this open review is that a lot of information about long COVID is only available in English. And so we've recommended that information about long COVID is available not just in different languages, but also on different formats. So considering physical printouts, posters online and other formats and platforms where people seek information too,
Speaker: And lastly, we recommend a collaborative public health campaign in order to raise awareness about long COVID. And so we've really highlighted how this requires collaborations between public health institutions and community based organizations that are directly serving and supporting patients. So we've noted that, you know, this is a cross sectoral effort that's going to require collaboration from a lot of different actors and Kaylee, I'm not sure if you want to add to that.
Speaker: Yeah, thanks, Simran. I think our article talked about how important it is to listen to people when they're talking about their symptoms, about their experiences, and recognizing that long COVID exists, right? That this is an illness that many people are managing currently.
Speaker: And that one of these barriers is a lack of recognition of that by the general public, by health practitioners. And so looking to ways to support that recognition and to listen to patients we think is incredibly important. And we also recognize that this is challenging, right? With so many symptoms, it's not a clear diagnosis, especially for doctors who are seeing patients and then potentially referring them on to post -COVID clinics. And so we think
Speaker: that providing resources to care practitioners will also be beneficial because this is just one part of their overall practice and finding ways to support them in this too will reduce their own needs to go and seek information elsewhere. And so on the whole, just sort of facilitating knowledge to everyone about long COVID where we can. I think if I'm correct, I've read that long COVID
Speaker: know, COVID can affect up to 50 different systems in the body. So given the fact that you have a population where so many such a high percentage of people have had COVID, and it affects so many parts of the body, if you, you know, if you end up with with long COVID, then
Speaker: That seems like that just creates a really challenging landscape for physicians even to try to navigate.
Speaker: Incredibly challenging, right? And we have a healthcare system where we usually have diagnoses for certain conditions. You go in, you get a blood test, and you can say that you have a certain condition, and then they can refer you on to a specialist. But here we're dealing with something where there is no clear set of diagnostics, right? And so it can be very challenging to identify and refer patients on. Ed Young had a
Speaker: beautiful piece recently in the Atlantic talking about just this and how we often discount sort of quote unquote anecdotal evidence stories that people tell about their experiences because we view it as say being not quantitative or not robust enough.
Speaker: But in the context of an illness like long COVID, where there are so many different symptoms and experiences, listening to people and gathering those stories is actually a really important aspect of this whole process of identifying long COVID and supporting folks in accessing care. Well, deep out to Ed Young, he's just been a real light as a journalist through this whole long pandemic. Truly wonderful, yeah.
Speaker: Kaylee, long COVID's reach also affects unpaid care providers, including family and friends who care for those with long COVID. You're now undertaking a project focusing on their needs. What motivated this study?
Speaker: Well, I think about a year ago, our research team at the Pacific Institutes on Pathogens, Pandemics, and Society, we were talking about long COVID and the impacts on people. And we were recognizing, you know, there was research on symptoms, but also, you know, there was a real gap in sort of the secondary impacts of what people experience when they have long COVID, which is
Speaker: say missing work, not being able to undertake regular care responsibilities. And then thinking about what this actually meant even more broadly in our communities. So it doesn't just affect the people who themselves have long COVID, but it affects their families who may have to take up extra care responsibilities. Right now in the province, there are so many people who care for friends and family and that work is unpaid and they are an incredible support to our healthcare system.
Speaker: And so last year we reached out to family caregivers of BC to see if they would be interested in collaborating on a study to work with unpaid care providers, patients, paid care providers and researchers to really start to understand their experiences and to identify sort of next steps. So if we say, you know, here's what we know about long COVID so far, here's what we know about how it's impacting unpaid care providers, let's say.
Speaker: Where do we go from here? What are our key research priorities? And so really, this has been a convening opportunity to work together to identify community -centered research needs into the future. How will you approach getting people together for this study?
Speaker: Well, we've been recruiting through Family Caregivers of BC as our research partner and then holding interviews with folks. And we've also been working closely with the Provincial Health Services Authority post COVID interdisciplinary clinical care networks. And so leveraging sort of all that broad expertise, that's how we've been going about bringing folks together. And what do you hope to achieve through the project?
Speaker: Well, we're really hoping to achieve a few things. I mean, the first is just facilitating conversations and again, that listening of people's experiences to identify really important knowledge gaps. So what are our priorities and what do the people who long COVID affects and their families, what do they actually think is the priority? It's one thing to come in as a researcher and say, we think we should study XYZ. It's very different to actually listen to communities and identify what they think is the most important research goal.
Speaker: That's one aspect. And the other is really to begin mapping the information accessibility and resources that are currently available to patients and to their unpaid care providers to identify, again, sort of, where do we need more information?
Speaker: Do we need information in more languages spoken in BC? Where should we make those resources available? What information do people trust? All of that can then be used to help inform the future resources that are made available in the province.
Speaker: Now, there's obviously a lot that needs to happen in the medical system and in social resources for people to address long COVID, but I want to ask each of you what you think regular people can do to support folks with long COVID. Sriman, what are your thoughts? Yeah, I think a primary goal or takeaway from this research is just to listen to patients with long COVID. And I think that's sort of what I would share with community members,
Speaker: people in their lives sort of listening to the symptoms that other people are having and understanding ways to support them. Kaylee, what are your thoughts there? Yeah, I absolutely echo what Simran just said. I think having someone to hear your experience and listen and validate it, we are learning is so important.
Speaker: for long COVID patients and their families. And so I think that if someone shares their story with you, to listen to it. And if you don't know anybody currently who has long COVID, I mean, it could be that folks are experiencing it and haven't shared that. As we were talking about earlier, there's a lot of stigma around this illness and finding information about it. And so being aware that there actually may be folks in your circle who either don't know that they have long COVID
Speaker: or who are experiencing it and are still managing it sort of on their own secretly. So having some compassion for that as well. Well, it's been really great to talk to both of you this morning. And I really appreciate your joining me and also the work that you're doing. Thank you so much for having us and for your interest in this project and for sharing this work. We really appreciate it. Great. Thank you so much. It was great talking to you.
Speaker: I've been speaking with Kaylee Byers and Simran Purewall. Kaylee Byers is a senior scientist at Pacific Institute on Pathogens, Pandemics, and Society at Simon Fraser University. Simran Purewall is from Pips as well, where she is research and engagement coordinator. I'm Lorraine Chisholm.
Speaker: The Red Eye Collective is based in Vancouver. You can check us out at coopradio .org -slash -redeye.
