By Tamsin Zandstra
The Long COVID Initiative recently interviewed Elisa Perego, Ph.D., who was the first person to use “Long COVID” as a hashtag in May of 2020. The conversation touched on social media’s role in establishing both the patient-led term “Long COVID” and the community that has sprung up around it.
LCI: You were the first person to use the term #LongCOVID in May of 2020. Did you ever anticipate it gaining so much traction so quickly, to become what it is and means to people today?
EP: Long COVID is now such a huge phenomenon although at the very start it was difficult to know how much traction the term would gain and how quickly people would get behind it. But I understood the potential and power of the name and its specific value as a patient-derived term with an ever-growing patient-led movement. It was extremely powerful when we received the World Health Organization (WHO) recognition of Long COVID so early on in the pandemic.
What was your motivation for using the term? And why through social media?
I used the term “Long COVID” for many reasons, ranging from the nature of COVID as a disease, my own experience with it and my way of thinking about it, and criticism of early classifications of COVID.
In my own pre-COVID research, I focused on showing how disabled people could be creators of change and impactful social actors through history. I also worked extensively to study society’s responses to social crises. I, thus, understood the moment we were living in in early 2020 and the potential of social media like Twitter. I was already on Twitter talking about COVID-19 and prolonged symptoms (before May 2020
) as I was in Lombardy, Italy, an additional early epicenter outside of China, at the beginning of the pandemic and I saw firsthand what COVID was capable of.
I created the Long COVID hashtag to connect people and have co-authored publications that address the importance of the patient-made term, Long COVID.
What was the initial social media response following your use of the term Long COVID?
The term was almost immediately adopted by a number of advocates, especially in the UK. The term and hashtag went viral in late spring to summer 2020. There was also a growing international advocacy movement in many countries; like Apres 20 in France, COVID Persistente in Spain, and Amy Watson in the US created the term “long haulers.”
Since you created the term Long COVID how has your work evolved?
I have been increasingly involved in advocacy, policy, research, and science communication around COVID and Long COVID. My Twitter account has grown significantly and I have been able to use it as a research, communication and learning tool to inform people about Long COVID. I had the opportunity to participate in the landmark WHO meeting in August 2020, which openly recognized Long COVID. My work has transitioned to be more interdisciplinary across medicine, policy and the medical humanities. I am helping support and shape the Long COVID advocacy movement and am a Long COVID Kids Champion with the UK Charity Long COVID Kids, for the recognition of pediatric Long COVID. My work is often hectic and multidimensional, and it can change a lot day by day. I am still severely affected by Long COVID.
Can sharing information about Long COVID on social media help engage younger generations and help them understand the severity of the virus?
Yes, absolutely. It’s certainly dependent on the context (country, socio-economic status, etc.). But we know, broadly speaking, that younger generations might be more involved with certain social media platforms rather than with traditional media, like newspapers.
What are the dangers of sharing information about Long COVID on social media?
Some information shared by “negative actors” (e.g.trolls) on social media can minimize the risks associated with SARS-CoV-2 infection. There is sometimes a great deal of misinformation about Long COVID on social media, with poor explanations of what the condition is, partial information, incorrect information or verbal abuse being shared.
Have you seen a lot of misinformation?
Yes, of course, there is a great deal of misinformation being shared by individuals, policy makers, some medical professionals and the press. This kind of misinformation is often about minimizing the risks of infection. This results in the sharing of statements such as “Long COVID is rare”, “Long COVID is just fatigue and brain fog”, “Long COVID is mysterious.”
Can the use of social media and reaching people on their preferred platforms help improve this?
Yes, of course. An issue is the quality and accuracy of the information being shared. You need real experts, not just the right platform. Not everyone promoted or presented as an “expert” on Long COVID is a real expert.
How has the Long COVID patient community responded to misinformation circulating on social media?
The Long COVID patient community has responded by using Twitter and other social media platforms to share the science behind Long COVID. The production of patient-led scientific evidence and literature has been extremely important as well as engaging with conventional (i.e. non-patient) researchers. The community has also been able to participate in fundraising to support research projects, teaching and educating people on Long COVID through science communication, and traditional academic tools like conferences and lectures.
There is now something like a “Long COVID community” online, that mostly exists on social media. What role does this community have for people with Long COVID seeking support?
This community can help people find validation in their experiences and provide support and solidarity to people who are developing Long COVID now. The community can facilitate the sharing of knowledge, information, providing emotional support and sharing newly emerging scientific data. This data might be taken up by medical professionals, the media, and non-patient researchers, thereby contributing to better care and facilitating collaboration between researchers and patients.