Using crowdsourced medicine to manage uncertainty on Reddit: The case of COVID-19 long-haulers

Impact of COVID-19 Infection and Persistent Lingering Symptoms on Patient Reported Indicators of Nutritional Risk and Malnutrition

“…Very little research exploring the eating patterns of patients with long-COVID has been published to date. Most of the research on long-COVID eating patterns that is currently available has focused on user-generated text posted by long-COVID patients on the internet looking for support and advice from other COVID-19 survivors [ 27 , 28 ]. Patients with long-COVID complain of diverse impacts of lingering symptoms on food preferences, appetite and intake, and weight.…”

“…Conversely, some state that since COVID-19 infection, they feel insatiable or need to consume more food to “hit the spot” for cravings, which can lead to eating more and gaining weight [ 27 ]. Patients also have reported trying different diets such as elimination diets, ketogenic diets, and intermittent fasting in an attempt to find dietary strategies to help improve long-COVID symptoms [ 28 ]. It is important to note that while some common COVID-19 symptoms, such as nausea or fatigue, may lead to a loss of appetite and reduced food intake, the reverse causal relationship, in which a decline in food intake leads to nausea and fatigue, cannot be ruled out.…”

Support amid uncertainty: Long COVID illness experiences and the role of online communities

“…Many people with Long COVID took to online communities to share symptoms, communicate fraught encounters with medical professionals, and offer support and advice to one another ( Moyer, 2020 ). Recently, scholars have begun to highlight the ways in which online communities facilitate sharing of illness narratives, social support, and uncertainty management among persons with Long COVID ( Day, 2022 ; Kingstone et al, 2020 ; Southwick et al, 2021 ; Thompson et al, 2021 ). Online communities connect people with a range of illnesses and medical conditions in their efforts to seek information, support, and recognition ( Conrad et al, 2016 ).…”

“…Online communities connect people with a range of illnesses and medical conditions in their efforts to seek information, support, and recognition ( Conrad et al, 2016 ). Social media, including Facebook (groups) and Reddit (subreddits), are popular platforms for connecting people with chronic illness ( Maslen & Lupton, 2019 ; Thompson et al, 2021 ). Online communities serve several functions for people with chronic illness, including knowledge sharing, identity work, peer-to-peer support and connectivity, advocacy, and mobilization ( Kingod et al, 2017 ).…”

“…Online communities should have a special significance for persons experiencing Long COVID due to pandemic social distancing restrictions that encouraged virtual communication, as well as limited information about persistent and varied COVID-19 symptoms in popular and medical discourse. Existing studies of online communities for persons with Long COVID suggest that these platforms provide spaces for persons to share their symptoms and health concerns, experiences with illness duration, test results and diagnosis, and worsening anxiety related to both their condition as well as frustration with doctors and feelings of invalidation ( Thompson et al, 2021 ). Moreover, while persons with Long COVID turned to online communities for information and support following an “abyss of silence” from their healthcare professionals, these online communities contained largely unregulated content shared by members with widely varying symptoms and experiences, contributing to anxiety and frustration about one's own illness trajectory ( Day, 2022 ).…”