Social Media Mining of Long-COVID Self-Medication Reported by Reddit Users: Feasibility Study to Support Drug Repurposing

Background: Since the beginning of the COVID-19 pandemic, over 480 million people have been infected and more than 6 million people have died from COVID-19 worldwide. In some patients with acute COVID-19, symptoms manifest over a longer period, which is also called “long-COVID.” Unmet medical needs related to long-COVID are high, since there are no treatments approved. Patients experiment with various medications and supplements hoping to alleviate their suffering. They often share their experiences on social media.

Objective: The aim of this study was to explore the feasibility of social media mining methods to extract important compounds from the perspective of patients. The goal is to provide an overview of different medication strategies and important agents mentioned in Reddit users’ self-reports to support hypothesis generation for drug repurposing, by incorporating patients’ experiences.

Methods:We used named-entity recognition to extract substances representing medications or supplements used to treat long-COVID from almost 70,000 posts on the “/r/covidlonghaulers” subreddit. We analyzed substances by frequency, co-occurrences, and network analysis to identify important substances and substance clusters.

Results: The named-entity recognition algorithm achieved an F1 score of 0.67. A total of 28,447 substance entities and 5789 word co-occurrence pairs were extracted. “Histamine antagonists,” “famotidine,” “magnesium,” “vitamins,” and “steroids” were the most frequently mentioned substances. Network analysis revealed three clusters of substances, indicating certain medication patterns.

Conclusions: This feasibility study indicates that network analysis can be used to characterize the medication strategies discussed in social media. Comparison with existing literature shows that this approach identifies substances that are promising candidates for drug repurposing, such as antihistamines, steroids, or antidepressants. In the context of a pandemic, the proposed method could be used to support drug repurposing hypothesis development by prioritizing substances that are important to users.

Source: Koss J, Bohnet-Joschko S. Social Media Mining of Long-COVID Self-Medication Reported by Reddit Users: Feasibility Study to Support Drug Repurposing. JMIR Form Res. 2022 Oct 3;6(10):e39582. doi: 10.2196/39582. PMID: 36007131; PMCID: PMC9531770. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9531770/ (Full text)

Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole

Note: The ME Association does not recommend that anyone with ME/CFS attempt to obtain or to take this drug, even in small doses, until such time as more appropriate research can better determine safety and efficacy. Read their full statement here

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, debilitating illness of unknown etiology. An ME/CFS diagnosis is based solely on symptoms with case definitions made by expert consensus, including the Fukuda (1994), Canadian Consensus Criteria (CCC, 2003), International Consensus Criteria (ICC, 2011), and the Institute of Medicine (IOM, 2015) case criteria. According to the most recent IOM case definition, the core symptoms of ME/CFS include debilitating fatigue, unrefreshing sleep, post-exertional malaise, and either cognitive dysfunction or orthostatic intolerance [1]. Although the cause of the illness is unknown, a growing body of evidence suggests that ME/CFS involves inflammation of the brain. Up to 85% of patients with ME/CFS report symptoms of cognitive impairment also referred to as “brain fog,” which includes difficulty with memory, attention, and information processing. Additional evidence includes changes in inflammatory cytokines in both plasma and cerebrospinal fluid correlated with the severity of symptoms [2]. Other studies using positron emission tomography (PET) show evidence of activated microglia or astrocytes in various regions of the brain in patients with ME/CFS [3].

Source: Crosby, L.D., Kalanidhi, S., Bonilla, A. et al. Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole. J Transl Med 19, 50 (2021). https://doi.org/10.1186/s12967-021-02721-9 https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02721-9 (Full text)