This week, a new resource that I’ve been working on for the past few months went live: a comprehensive source list including Long COVID patients and experts who are willing to talk to reporters. This source list project was a collaboration with Fiona Lowenstein, who’s a journalist, speaker, consultant, and founder of the Body Politic support group for Long COVID patients.
Here’s some info about the source list:
- It includes over 300 Long COVID sources from the U.S. and other countries, spanning all ages, race and ethnicity groups, and other demographics.
- It’s sorted into four categories: patients who identify as Long COVID experts and/or advocates; patients who aren’t experts but can speak to their own lived experience; other experts (scientists, clinicians, advocates, etc.); and related conditions and experiences.
- Patients and experts have identified topics about which they’d like to talk to journalists, including Long COVID research, patient care, policy, mental health, relationships, financial insecurity, and related conditions (such as ME/CFS and dysautonomia).
- The list is hosted on Notion, allowing users to search and filter for specific source needs.
- This project is ongoing, and we will be adding more sources on an ongoing basis. If you would like to be added or have other feedback, please email LongCovidSourceList@gmail.com!
To further explain the motivations for this project and provide some advice on how to use the source list, I did a Q&A with Fiona. Our conversation included the gaps in Long COVID news coverage, connecting the dots between Long COVID and other chronic conditions, recommendations for interviewing Long COVID patients, suggestions for covering this condition in year three of the pandemic, and much more. This interview has been lightly edited and condensed for clarity.
Betsy Ladyzhets: Why did you want to do this project? Why was it worth putting the time and effort into making this source list?
Fiona Lowenstein: I think there were two things. One was almost like a personal desire to have fewer media inquiries in my own inbox. I was receiving a lot of emails from journalists who were looking for very specific types of Long COVID sources. Part of that was because I started the support group Body Politic, and people were reaching out, asking me to post stuff in the group. Also, I have written a lot of stories on Long COVID and interviewed a lot of patients, and so people wanted help reaching more patients.
I knew that a lot of the support group leaders were very burnt out and kind-of exhausted, and that media requests are one of the biggest sources of, like, email stress. And I wanted to think about, is there a way to just ease this process for everyone? I was also noticing that journalists were getting frustrated with how long it was taking to get in touch with [Long COVID] sources, because so many of these groups are run by chronically ill people, and a lot of them are volunteers. They’re not always able to respond to an email in twelve hours.
Part of [the motivation] was also feeling like the news coverage of Long COVID, a lot of it focuses on the same people and the same stories. I’m someone that has been included in a lot of those articles, and at a certain point in time, I stopped doing press on my own experience, because I was like, this story is already out there. And I’m not sure it’s even reflective of the average experience of Long COVID, just because I had a lot of privilege that helped me get care and rest through my recovery.
So, I wanted to see more types of patients talked about, more patients who aren’t necessarily young and super healthy and fit before they got sick. Because that was very much the narrative for a long time. And that is sort-of an ableist narrative, to be emphasizing so strongly that so many of us were young and healthy, and we should care about our chronic illnesses because of that.
Also, I know that Long COVID coverage is going to have to go deeper and is already starting to go deeper in the coming year. Most news outlets have had at least one story explaining what Long COVID is. But we’re now at a point where we’re going to have to delve deeper into, like, what are the financial risks? What toll does [Long COVID] take on relationships? How are people navigating workplace accommodations? What about these specific symptom clusters that might morph over time? What about people who have additional diagnoses [of other chronic conditions] on top of having Long COVID?
And the last thing was, I want to connect the dots between Long COVID and other post-viral or infection-initiated chronic illnesses, like ME/CFS, dysautonomia, and other diagnoses that people with Long COVID have received. These are also diseases that have a lot in common, both in terms of symptoms and the way that they present but also in terms of social and political issues with regards to getting care, getting funded research, etc.
I think those of us who have had Long COVID and been involved or even been a fly on the wall in this advocacy work have seen how people with related chronic illnesses are not getting as much media attention. Even though they are really helping the Long COVID advocacy movement in a huge way, and helping patients on a day-to-day basis. So, that was why I wanted to include people with related conditions and experiences [on the source list], ideally, as well.
BL: Yeah, that makes sense. When we were starting to put together the Google forms [used to collect source’s information] and thinking about who we wanted to send them to, what were some of the things that you were considering?
FL: I was thinking a lot about the patient side of things. I wanted to connect with the leaders of the big [Long COVID] support groups, especially the private support groups, because the private support groups are a little more insular and more highly moderated. They’re the places where we can assume that a larger majority of the members actually have Long COVID. But the private support groups also have no way for journalists to kind-of see into those ecosystems. So, I wanted to connect with those support group leaders and have them share [the project within their groups]. I also did a lot of sharing on social media, because I’m followed by a lot of Long COVID patients and people living with the illness. And I messaged past sources, other people that I’ve talked to.
That being said, I was a little surprised—we got a lot of patient responses, but I think we could have gotten more. (Editor’s note: The list includes over 250 patients and 80 non-patient experts.) I know that there are more [Long COVID] people out there who want to tell their stories. But I think that, among the population of people with Long COVID who want to talk to the press, there are a lot of people who are just burnt out and tired of filling out forms. And there’s also a lot of distrust of the media. There was at least one support group that basically said, “We don’t want to participate in this because we don’t want our members’ information out there for reporters to access, we’ve had so many bad experiences with journalists.”
That was a tricky thing to navigate. To that end, something I’m hoping to do at some point is organize another media training with some of these support groups, to talk through, like, what are some of the issues that are coming up in the journalist-patient relationship? What are your rights as a source when you’re being interviewed? That sort of thing.
BL: Was there anything else that surprised you, when you were looking at the form responses? I know one thing that struck me when I was looking at them was, how many patients checked the box for experience with financial instability. I knew that was an issue, but it’s not something that a lot of articles have focused on so far.
FL: Yeah, that’s a really good point. I filled out the form, because I’ve had Long COVID, and I checked that off, too. I think that, in the Long COVID communities, [financial instability] is such a huge issue, and it’s being talked about constantly. Even for people like myself—I had a relative amount of financial privilege, I had savings that I could rely on after I got sick and couldn’t work. And I had my parents and my partner’s parents, they were able to contribute a little bit to our rent and our groceries and that sort of thing. But it’s still massively set back my finances. So, I think almost everyone has had that experience on some level.
I think one thing that surprised me was how many people had a diagnosis of another condition on top of Long COVID. It’s good, it’s heartening to see that people are getting diagnosed with things like dysautonomia, myalgic encephalomyelitis, and mast cell activation syndrome. I know that [these diagnoses are] happening a lot with the patient advocates that I know, but those are people who often have the highest levels of access to a clinician or a Long COVID clinic. But [the form responses] made me wonder if maybe also, there’s been so much information-sharing online and between patient groups that people are now able to diagnose themselves with this stuff—which is very common in chronic health communities because it can be so hard to get a diagnosis.
So, it was interesting seeing that so many people have checked off dysautonomia and these other things, because it made me feel like, okay, there actually is a pretty large group of people that are very aware of these other illnesses. I could not have told you what dysautonomia was, prior to getting COVID—even though I technically had a form of it, it turns out, before getting COVID. It seems indicative of the extent to which community information sharing has spread, and actually helps people figure out what they’re dealing with.
And those diagnoses are also really helpful for figuring out your symptom management techniques. Like, I learned rest and pacing from people in the ME community. So that’s a huge part of it, too: it’s having that community that you can look to, in addition to Long COVID. People who have been sicker for longer, and research has been going on for longer, and you can learn from [these other chronic illness patients].
BL: What recommendations do you have for people who are using the source list?
FL: There are a couple of kind-of broad stroke recommendations that we tried to account for in some of the questions we included on the list.
For example, one thing that I have said to colleagues and also publicly throughout the pandemic is: if you are a journalist reporting on Long COVID, you unfortunately have to have a pretty flexible schedule with your interviews, because this is an unpredictable illness. Someone could tell you, “Yeah, I’m available tomorrow at 2pm.” And then they could end up being really sick at that time. So, in the questions for patients, there’s a space where they can indicate how quickly they think, on average, they’ll respond to reporters. Hopefully that will help with this issue of, the urgency of tight deadlines, while trying to report on an issue in which people can’t always get back to you in a short timeframe.
Just be aware that these are people who, even though a lot of them may not be working, are dealing with a full schedule of managing their own health. It’s also important to know that there is distrust amongst this population, in terms of interacting with journalists and reporters. I’m not saying that exists with every single one COVID patient, and lots of people have had really good experiences talking to journalists.
But still, for that reason, it’s sometimes helpful, when you’re interviewing someone with Long COVID, to explain why you’re asking the questions you’re asking. For example, on the source list, we’ve included both people who have tested positive for COVID-19—via a PCR test or other diagnostic test—and people who have not tested positive. Some of those people who have not tested positive have a clinical diagnosis of COVID or Long COVID, while others do not. It’s important to understand the difference between those testing statuses and those diagnosis statuses. These statuses may have something to do with how intense the person’s acute symptoms were, but it has more to do with where the person was at the time that they sought the test, what time in the pandemic it was, and what sorts of privilege they might have or not have within the healthcare system in terms of accessing a test. Like, do they have a car and can they drive themselves to get a test?
That [testing status] question comes up a lot. And I think that journalists, when asking about just testing status, a helpful thing to do is explain why you’re asking. You could say, “I’m going to include people of all testing statuses in this article, because I understand that not everyone who has Long COVID was able to get a positive test for an acute COVID infection. But just for the purposes of accuracy, I need to ask, are you someone who had a positive COVID test or did you not have a COVID test? Because I need to include those details.”
Also, some people on the list have specified different methods of interview that they are comfortable with. But it never hurts to ask and double check [about interview method]. There are people who have really intense screen sensitivity and light sensitivity, and so emailing is going to be more difficult for them. Then, there are other people for whom a Zoom call or phone call is actually going to be more difficult, and they’d prefer texting, or emailing, or audio messages. I know a lot of times there is sort-of a reticence with journalists to use methods other than a Zoom call. But a lot of Long COVID patients have been communicating super effectively using nontraditional means for the entire pandemic. So, have a bit of trust in their ability to do that.
BL: Are there any other things that you want journalists to know about talking to Long COVID patients?
FL: There are a lot of things! One other thing to keep in mind is that everybody has a different level of expertise on Long COVID. A lot of times, I’ll seen articles—or I’ve even been in this position—there are people on our list who have identified themselves as experts on Long COVID, or patient advocates, outside of just their lived experience. Those are people who can, yeah, they might be able to speak to their lived experience, but they’re also going to be able to speak to, like, what they’re seeing in their support group or their experience, trying to advocate for policy change.
And I think it’s a shame when the stories about those advocates focus only on their own health issues. That happens a lot, just because I think journalists have a hard time finding people who are willing to talk about their own health issues. But be aware that there are a lot of people who have really a higher level of expertise than just, “This is what happened to me in my body,” people who have taken a lot of care and a lot of time to read the latest research on Long COVID and are in touch with doctors and scientists and policymakers. I think treating those people as experts on the subject is important.
On the flip side, not every Long COVID patient is going to be able to speak to those macro issues, and not every Long COVID patient has the same understanding of what’s happening in their body. There are also a ton of people—and these people probably are not on our list, unfortunately—people who have Long COVID and don’t know what it is, or don’t know that it’s called Long COVID. So, knowing that people’s understandings will vary from individual to individual is important as well, I think.
And don’t be afraid to interview people with related illnesses! Again, dysautonomia is an incredibly common diagnosis, it seems, for people with Long COVID. But I haven’t really seen many articles that are interviewing other people who have lived with dysautonomia for ten years, or scientists who are studying it, or that sort of thing.
BL: Yeah. How would you like to see the source get used?
FL: We had a media inquiry today [via LongCovidSourceList@gmail.com] that excited me because it was about a really hyper-specific local story. I would love to see more of that. Because I think Long COVID is an illness that does radicalize a lot of people, through getting sick and seeing like, “Oh, no one’s there to take care of me, and the government doesn’t care.” And a lot of people who are angry are organizing in their communities, or they’re even advocating on behalf of themselves.
I think, in the coming decade, we’re going to learn about more and more of these people who have been doing this [organizing] on the local level. Like, I know of many people who have organized really small support groups in their town or in their city. So, I’d love to see more hyperlocal coverage of how Long COVID is impacting individual communities. I’d also love to see more coverage of caregivers and people with loved ones who have Long COVID, and how folks are navigating those relationships. Because I think there are so many lessons we can learn about disability and chronic illness and relationships in general from those stories.
And obviously, I’d love to see more diverse sources. Near the beginning of the pandemic, there was a period of time where there were a lot of stories about health disparities. And we were talking a lot more about the impact of COVID on undocumented populations, or Black and Latinx and Indigenous populations in the US, or the people in rural areas or inner city areas.
We haven’t really seen a lot of that coverage for Long COVID. Part of that is because no one’s tracking it on a nationwide level, like we don’t have the case counts for Long COVID that we have for COVID infections. But there’s still stories to be done [on this issue]. You can go into a community and all you really need is one person, one source that has Long COVID in that community, to understand: How is that community grappling with this condition? Does that person know anybody else who knows what Long COVID is? Is that person educating everyone in their community on what Long COVID is? How did that person find care? Is there a hospital near them? Those are the stories I’d really like to see more.
Those stories, with an emphasis on those populations that were hit hardest at the beginning of the pandemic, and are still hard-hit. Like, I saw the other day that in Los Angeles, where I am, homeless populations have some of the highest rates of COVID infections. That would be a really interesting story and a really important story to look at, what does long-term care look like for those populations?
BL: You mentioned the fact that Long COVID cases are not tracked the way so many other COVID metrics are—which, as a data journalist, I definitely consider to be one of the biggest data gaps of the pandemic. Are there any other stories that you would want to see in that vein, or any other coverage areas you would like to see around Long COVID?
FL: Yeah. I think this idea would take kind of the right type of journalist, probably someone with a deep knowledge of chronic illness communities; it would be interesting to delve into what I was talking about before, in terms of these additional diagnoses that [Long COVID patients] have received and/or self-diagnosed themselves with.
I’m also very curious about how people get diagnosed with Long COVID, because it seems to be happening in a different way with everyone. There are the people like me, where I don’t have a clinical diagnosis of Long COVID—I don’t think I do, maybe my doctor put something on my chart—but like, I just have a COVID PCR test, and then I have records of going for care for these other related problems. And then I have an additional diagnosis of this kind-of dysautonomia-related thing.
We do now have an ICD code for Long COVID. But I’m not exactly sure that it’s being used in all situations. And like, if someone gets diagnosed with ME/CFS, are they getting diagnosed with both those ICD codes, or does one diagnosis overrule the other one? So, I think there’s a lot of interesting stuff there. You could also delve into how common it is to self-diagnose and what that looks like when you end up going to the doctor at some point later on. This [story] can be done in a variety of ways. People could also write guides on, “How do you get an accurate diagnosis?” And, “What does a diagnosis mean in terms of your insurance coverage, or your eligibility for disability benefits?”
I think [disability benefits are] another thing that is going to be huge. I get a lot of emails from people with Long COVID who have been denied long-term disability. One person I was speaking to was from a Republican state, and she was saying, like, “I’m from a state where the government shut down all the COVID-related social programs earlier than in other states. Why would I believe the caseworker in my state is going to take my Long COVID disability case seriously?”
I think that’s an interesting thing, too. COVID was highly politicized. Long COVID isn’t highly political in the exact same way simply because it’s not something that everybody knows about and is talking about. But there’s that question: if we know that COVID infections and COVID care can sometimes differ state to state based on the political leadership and what sort of funding has been put into healthcare systems, how does that look for Long COVID? What does that mean for people applying for disability benefits? Are people in blue states having an easier time getting approved for long-term disability? Does it not matter? That sort of thing.
BL: Yeah, that’s a good point. Those were all of my questions—is there anything else that you think is important for people to know about this project or about using the list?
FL: Well, I’m curious—I know that you were writing about Long COVID and looking for sources, but I’m kind of curious why you wanted to participate in this project and why it felt important to you?
BL: I think that, as I said a bit ago, I feel like this is a really important data gap. There’s this feedback loop where, we don’t have really solid numbers about Long COVID, and so people don’t know about it, and so that contributes to the lack of numbers, and then it sort-of spirals in that way. And this [project] seemed like a way to combat that situation, at least a little bit. And also, I like making resources for other journalists, it’s part of the reason why [the COVID-19 Data Dispatch] exists, basically. This project felt like an extension of that goal.
FL: Yeah, that makes a lot of sense. I think there is an enormous desire for those of us who followed Long COVID from the beginning to see it get its due in the media. And I think, now that we’re entering year three, and we’re hearing that Omicron is potentially more mild—it just feels like, when is it going to be the time that we fully turn our attention to this? In terms of gathering the data and, and writing about it.