Loss of Smell and Taste in Patients With Suspected COVID-19: Analyses of Patients' Reports on Social Media

Abstract

Background: The year 2020 was the year of the global COVID-19 pandemic. The severity of the situation has become so substantial 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 support each other.

Objective: Our goal is to determine the benefits and limits of using social media to understand the symptoms of patients with suspected COVID-19 with mild to moderate symptoms and, in particular, 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 members of an internet group known as COVID-19 Smell and Taste Loss, founded on March 24, 2020, 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: Membership groups on social media have become rare sources of support for patients with suspected COVID-19 with mild to moderate symptoms. These groups provided mental support to their members and became resources for information on COVID-19 tests and medicines or supplements. However, the membership was voluntary, and often the members leave without notification. It is hard to be precise from the free voluntary reports. The number of women in the group (6995/9227, 75.38% as of October 12, 2020) was about three times more than men (2272/9227, 24.62% as of October 12, 2020), and the peak age of members was between 20-40 years in both men and women. Patients who were asymptomatic other than the senses comprised 14.93% (53/355) of the total patients. Recovery of the senses was higher in the patients who were asymptomatic besides having anosmia and ageusia. Most (112/123, 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=.02). 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.

Keywords: COVID-19; ageusia; anosmia; asymptomatic; benefit; diagnosis; free reports on social media; limit; patient-reported; recovery of senses; senses; smell; social media; symptom; symptomatic; taste.

Figure 1

Increase in the number of members (red) and active members who make posts or comments to other posts (black). A: Date of the World Health Organization announcement on the pandemic; B: COVID-19 Smell and Taste Loss membership group founded; C: increase of over 1000 members within a few days following the interview of the founder of the group on the BBC.

Figure 2

Indoor and outdoor signs released by the CDC as free to be printed and used. CDC: Centers for Disease Control and Prevention.

Figure 3

Summary of the reply to the question “were you able to get tested immediately after the onset of the symptoms of COVID-19” (A) and classification of the comments related to their selection. (B) Most often listed reasons that they could or could not get tested were the time of onset (before June or after June when the Centers for Disease Control and Prevention announced changes in the typical symptoms and included more symptoms), their jobs as essential workers or supervisors’ arrangements, pre-existing health conditions, and hospitalization because of symptoms.

Figure 4

Availability of medical treatments. The result of another choice "hospitalized and then stayed at home with medicines prescribed by the doctors" is not shown as no one selected the option.

Figure 5

Reasons to join the membership group. Multiple selections allowed and adding options was allowed.

Figure 6

Number of members of the COVID-19 Smell and Taste Loss group sorted by age and sex.

Figure 7

Top 20 countries with a large number of members. Total number of members in these 20 countries was 8654 as of October 12, 2020. The numbers shown inside or outside of the figure indicate the percentage of members of each country.

Figure 8

Recovery of senses. Earliest 50%: patients who lost their senses and recovered; longer 50%: patients who lost their senses and took a longer time to recover.