JMIR Publications

ABSTRACT

Background:

The year 2020 has now become the year of the global pandemic of coronavirus disease 2019 (COVID-19). The severity of the situation has become so extraordinary that many or even most of the patients with mild to moderate symptoms had to self-isolate without specific medical treatments or even without being tested for COVID-19. Many patients joined internet membership groups to exchange information and also to support each other.

Objective:

Our goal is to determine the benefits and limits of utilizing social media to understand the symptoms of suspected COVID-19 patients with mild to moderate symptoms, and especially their symptoms of anosmia (loss of the sense of smell) and ageusia (loss of the sense of taste). The voluntary reports on an internet website of a membership group will be the platform of the analyses.

Methods:

Posts and comments of the members of a membership group known as COVID-19 Smell and Taste Loss, founded on March 24th to support patients with suspected COVID-19, were collected and analyzed daily. Demographic data were collected using the software mechanism called Group Insights on the membership group website.

Results:

Benefits: Membership groups on social media have become rare sources of support for suspected COVID-19 patients with mild to moderate symptoms. These groups provided mental support to their members, and also became resources for information on COVID-19 tests and medicines/supplements. Limits: The membership is voluntary and often the members leave without notification. It is hard to be precise from the free voluntary reports. Demographics: The number of women in the group (71.03 %, n=1893) was about three times more than men (28.97 %, n=772) and the peak age of members was between 20 to 40 in both men and women. Symptoms: Patients asymptomatic other than the senses comprised 14.93% (n=53). Recovery of the senses was higher in the patients who were asymptomatic besides having anosmia and ageusia. Most (91.06%) patients experienced other symptoms first and then lost their senses, on average 4.2 days later. Patients without other symptoms tended to recover earlier (P=0.017). Patients with anosmia and ageusia occasionally reported distorted smell and taste (parosmia and dysgeusia) as well as experiencing or perceiving the smell and taste without the sources of the smell or taste (phantosmia and phantogeusia).

Conclusions:

Our analysis of the social media database of suspected COVID-19 patients’ voices demonstrated that, although accurate diagnosis of patients is not always obtained with social media-based analyses, it may be a useful tool to collect a large amount of data on symptoms and the clinical course of worldwide, rapidly growing, infectious diseases.