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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.
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.
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.
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 (
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.
Recent outbreaks of COVID-19, caused by SARS-CoV-2, have escalated into a worldwide pandemic. Over 29.4 million people in the United States alone have contracted the virus, causing over 532,000 deaths as of March 13, 2021.
According to the World Health Organization (WHO), “serious symptoms” are defined as “difficulties in breathing or shortness of breath, chest pain or pressure, loss of speech or movement” [
Recently it has been shown that there is a high percentage (40% to as high as 96%) of asymptomatic [
Near the start of the pandemic, a group to support patients who lost their senses of olfaction or taste due to contraction of COVID-19, known as
The aim of this study was to analyze the posts and comments on this social media membership group to establish the benefits and limits of using social media to understand COVID-19 and to investigate the symptoms of mild to moderate COVID-19 patients, especially focusing on anosmia and ageusia. As earlier studies reported, these symptoms are highly observed in patients with COVID-19 [
A membership group called
The study is approved as exempt (Institutional Review Board protocol number 10082020-1, Exempt Category #3)
Because, in this group, members freely reported their cases, the level of detail for each member was not consistent. We classified the reports by whether the patient had other symptoms than anosmia and ageusia, and whether they recovered their senses, and then selected several reports that described their symptoms in detail.
Fisher exact test was used to statistically evaluate the recovery rate among groups.
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.
What were considered the symptoms of COVID-19 have changed from the earlier stage of the pandemic in spring 2020 to summer and fall 2020.
Indoor and outdoor signs released by the CDC as free to be printed and used. CDC: Centers for Disease Control and Prevention.
Thus during the early stage of the pandemic, there were many people who got sick and self-diagnosed themselves with COVID-19 (suspected COVID-19 patient). This inability to get a COVID-19 test immediately after the onset of symptoms also resulted in the inability to get immediate medical treatments because medicines were not prescribed without an official diagnosis. We asked a question about the way they spent time after the onset of symptoms and found that about 90% (n=204,) of the 221 members who replied either stayed at home with generic medicines and supplements (n=162, 73.73%) or stayed at home without any medicines (n=40, 18.10%;
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.
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.
The self-isolation situation, staying at home, itself can cause anxiety. With symptoms of suspected COVID-19 and without a COVID-19 test and medical treatment, it is not hard to imagine that this situation causes high anxiety. It is possible during self isolation to obtain information from the internet and, if available, to join a patient group to exchange information. We asked the members the reasons that they joined the group. We found that the top three reasons were
Reasons to join the membership group. Multiple selections allowed and adding options was allowed.
Demographic data for the registered members (n=9227 as of October 12, 2020) of the social media site is shown in
Number of members of the COVID-19 Smell and Taste Loss group sorted by age and sex.
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.
In December 2019, when the first reports on the outbreak started in Wuhan, China, the major symptoms reported were shortness of breath, cough, fever, and diarrhea. However, it has become clear that many patients who contracted the virus are asymptomatic yet contagious [
Symptoms other than anosmia or ageusia reported by COVID-19–induced anosmia or ageusia patients.
Region and symptoms | Patients, n | ||
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Headache, migraine, pressure in head | 143 | |
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Dizziness, light head, vertigo | 25 | |
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Depression, anxiety | 22 | |
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Foggy brain | 8 | |
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Insomnia | 7 | |
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Forgetful | 2 | |
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Hallucination | 1 | |
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Disoriented | 1 | |
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Nightmare | 1 | |
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Congested sinus, pressure in sinus, stuffy nose | 67 | |
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Burning nose, nose pain, inflammation in nose, nasal pressure | 51 | |
|
Running nose | 21 | |
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Sneeze | 11 | |
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Bloody nose | 8 | |
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Dry nose | 4 | |
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Dried glue mucus | 2 | |
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Cough | 91 | |
|
Sore throat, burning sensation in throat | 47 | |
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Chest pain, chest tightness, burning lungs | 43 | |
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Short breath, difficulties in breathing | 31 | |
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Congested throat | 4 | |
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Wheezing, harsh voice | 3 | |
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Throat congestion | 1 | |
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Eye pain, sore eyes | 18 | |
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Dry eye | 3 | |
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Light sensitivity | 2 | |
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Pink eye, red eye | 2 | |
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Watery eye | 2 | |
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Vision affected, difficulties in distance vision | 1 | |
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Dry mouth, sore mouth | 6 | |
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Tooth pain, tooth sensitivity | 3 | |
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Tingling in tongue, sensation in tongue | 2 | |
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Film on tongue, thrush | 2 | |
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Dry lips | 1 | |
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Burning mouth | 1 | |
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Ear pain, ringing ears, tinnitus | 20 | |
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Muffled ear, ear congestion, ear infection | 4 | |
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Deafness in ear | 1 | |
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Nausea, upset stomach | 17 | |
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Diarrhea, off stomach | 14 | |
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No appetite | 9 | |
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Stomachache | 1 | |
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Fatigue, drained, winded | 117 | |
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Fever, feverish | 81 | |
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Body ache include all parts other than in the head area, muscle ache | 74 | |
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Chills, shiver, chills and sweating | 19 | |
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Rash on body | 8 | |
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Malaise | 6 | |
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Pins and needles in leg | 6 | |
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Sensitive skin, sore skin pain | 3 | |
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Burning up | 2 | |
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Numb at toe, numb at hands | 2 | |
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Face hurt, pressure in face | 4 | |
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Facial palsy | 2 | |
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Skin wrinkle | 1 | |
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Dry skin | 1 | |
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High blood pressure | 1 |
During the time period that the posts from the members were recorded (March to the end of June 2020), there were 355 members who posted reports of their smell or taste dysfunction and other symptoms they had. Of these 355 members, the percentage of patients without other symptoms comprised 14.93% (n=53), and 85.07% (n=302) of them had other symptoms than the loss of their senses. Almost 10% had recovered their senses by the time this report was summarized (recovered vs not recovered: n=34, 9.58% and n=321, 90.42%). The percentage of patients who recovered their senses was higher in the patients who did not have other symptoms besides anosmia and ageusia (recovered with other symptoms vs without other symptoms: 25/302, 8.28% and 9/53, 16.98%).
There were 123 members who reported that they had other symptoms and reported the timing of the onset of the loss of senses and other symptoms. Of the 123 members, 112 (91.06%) members reported that other symptoms started first. The average difference of the days between the onset of other symptoms and the onset of the loss of senses was 4.2 days. There were 6 (4.9%) members who reported that the onset of the loss of senses occurred on the day other symptoms started, and 5 (4.07%) members who reported that the loss of senses occurred before other symptoms started. The average difference of the days between the onset of the loss of senses and other symptoms was 1.6 days when the loss of senses preceded the onset of other symptoms.
The duration of time until recovery varied largely, with some people regaining their senses within a week and some people who lost their senses at the beginning of the pandemic and still had not recovered their senses at the end of June 2020. As we found the tendency that patients without other symptoms had a rather higher recovery rate, we examined if these differences correlated with the duration to recover their senses as well.
Patients with anosmia and ageusia occasionally reported distorted smell and taste (parosmia and dysgeusia) as well as the smell and taste without the sources of the smell or taste (phantosmia and phantogeusia).
Days until the recovery of senses sorted by the days and the symptoms.
Order | Until recovery of senses (days) | Symptoms other than anosmia and ageusia |
1 | 5 | Low grade fever, fatigue, insomnia |
2 | 9 | No other symptoms |
3 | 9 | No other symptoms |
4 | 11 | Fatigue, chest pain, short breath, no fever, no cough |
5 | 12 | No other symptoms |
6 | 13 | No other symptoms |
7 | 13 | No other symptoms |
8 | 14 | Cough, nausea |
9 | 14 | No other symptoms |
10 | 14 | Slight fever, runny nose |
11 | 14 | Fever, aches, chills, sore throat, headaches, rash |
12 | 14 | No other symptoms |
13 | 14 | No other symptoms |
14 | 15 | Nose pain, fatigue, headaches |
15 | 15 | Fatigue |
16 | 17 | Cold, runny nose, fatigue, sore eyes, congestion |
17 | 17 | Fatigue, cough |
18 | 21 | Burning nose, fatigue, eye pain, shiver |
19 | 21 | Fatigue, sore throat |
20 | 23 | Fever |
21 | 27 | Dizziness, disorientation, foggy brain, insomnia, ear congestion |
22 | 28 | No other symptoms |
23 | 30 | Back pain, sore throat |
24 | 31 | Burning nose, headache, fatigue, sinus infection |
25 | 32 | Nose is super dry and inflammation is high |
26 | 35 | Backache, low fever, very mild nasal congestion and mild difficulty breathing. |
27 | 38 | No fever, chills, coughs, headache, muscle ache, fatigue |
28 | 42 | Fatigue, feverish, cough |
29 | 42 | unwell, sore throat, breathless, headaches, fatigue, nausea, tinnitus |
30 | 47 | Fever, headache, fatigue, sore skin |
31 | 56 | Cough, fever, muscle ache, lethargy |
32 | 69 | Fatigue, headaches, fizzy, burning nose |
33 | 77 | Fatigue, headaches |
34 | 83 | Fatigue, headache, nasal pain |
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.
Types of phantosmia and phantogeusia.
Types of phantosmia and parosmia | Reported cases, n |
Smoke, ashtray, cigarette, burnt, fire, dusty | 43 |
Chemical | 7 |
Ammonia, vinegar | 6 |
Metallic | 5 |
Garbage, rotten | 3 |
Skunk | 1 |
Other expressions: weird, strange, distorted | 6 |
Here, we show several examples of reports from the patients. In selecting the examples, we first classified the 355 members who posted reports of their smell or taste dysfunction during March and June 2020 into the patients who recovered (fast recovery group and slow recovery group) and had not recovered, and those with or without other symptoms than anosmia and ageusia.
Case 1 represents a fast recovery group patient who recovered early and did not have other symptoms. The length of time until recovery of smell and taste was 9 days. This patient was not tested for COVID-19. The dates shown in
“Woke up and Lost all sense of smell on Thursday. Can’t taste can only taste salt or sweet. Smell seems to be coming back it’s now at about 10% maybe lower because I can only smell garlic and onion powder. Can’t smell perfume at all. I am day 6. I am praying it’s returning. Brother in law lost his smell for 11 days and it’s returned fully”
“I woke this morning and I can smell my toast in the toaster and also zoflora cleaning product can also taste the toast as well I would say it’s come back 30% so happy it’s improving daily thank god.”
“Quick update lost all sense of smell last Thursday complete loss no taste or smell. Yesterday i could smell spices on close inspection. This morning I could smell my toast in the toaster and also taste it it’s still not 100% but I would say it’s now at about 30% smell 50% taste it is getting better each day I’m now on day 7 since losing it so the general time frames are generally 7-14 days but if yours isn’t then don’t panic it will come back in time.”
“It came back together once my smell returned yesterday taste returned but can taste more than I can smell it’s 40% smell 60% taste which am hoping will improve daily I’m On day 7 too.”
“Hi all update to help anyone currently feeling scared and alone try and not to panic it will come back mine is now back 75% I’m day 7 I cried tonight when I ate dinner because I could taste and smell it very scary when all sense goes but the joy when it returns we often take this sense for granted please don’t worry it will return”
“100% back”
Here is another example from the fast recovery group, but the patient had other symptoms. The patient reported recovery of the senses in 13 days (however, at the time point of summarizing this report, we have heard that this patient started to experience parosmia starting from about 2 months after the recovery of the senses). The dates shown in
“I’ve noticed this other weird phenomenon and wanted to see if you all were experiencing it too. Since I got my first possible CV19 symptom 13 days ago (slight cough), whenever I shower my skin on my hands wrinkle up super fast...like within 5 minutes of being in the shower. It usually take a good 30 minutes for that to happen to me. Now I barely shampoo and my hands are all wrinkled. My wife noticed it happening to her too although she has had no symptoms. Anyone else notice this weird thing? Ps...my smell is coming back! It’s about 40-50% today and I’m on day 7. I hope it continues!!!”
“I’m on day 8 and yesterday was the weirdest day. I had the strange sense of a smell whenever I inhaled, like you, but mine was like a burning sour smell. And I got a slight metallic taste when I was eating food. Not going to lie, it was pretty awful. In fact, at the end of the day I started feeling sick to my stomach with the feeling that I had been smelling sour milk for hours and hours. Luckily today, that’s completely gone. Now I’m back to smelling things about 50%. I think it’s called Phantosmie. I don’t know, I’m going to do more research today.”
“I just wanted to write a positive post for those who are feeling anxious and scared. I’ve got my smell and taste back! It is GLORIOUS. Everything is so flavorful and the smells are incredible. I lost both senses 13 days ago and had absolutely no improvement for 5-6 days. I was so scared that it might never come back and it was very depressing. On day 5 or 6 I could just get a wiff of a few things that I passed by maybe at about 5%. It stayed there for a couple days and then slowly started to get better. I personally had a lot of ups and downs where one day it might be at 60% and then the next day back at 30%. I was feeling rather frustrated because I couldn’t tell if I was really getting better or not. Well I’m happy to say that the last two days I’ve been able to taste everything I’ve eaten and smelled things I haven’t smelled in almost two weeks!! I know it might drop again before being at 100% consistently but I feel hope that I will fully heal for the long haul. Those of you who are where I was a week or so ago...don’t give up. Try to stay hopeful even though it’s hard. I want this to encourage anyone who feels nervous right now. It’s a possibly that things will be ok.
“PS...I’m pretty sure I had CV19 but couldn’t get tested because I got don’t fit the criteria.”
“I had a dry cough and then a full head cold and I lost my senses once my cold started to get better. I did have one day of burning nose and chemical taste right before I started really getting better with my smell and taste.”
The next example is a patient of the slow recovery group who recovered after 42 days and had other symptoms. The dates shown in
“I started getting covid symptom April 1st and on day 4 my sense of smell and taste suddenly 100% dissapeared. Now this was only 4 days ago but it already feels like a lifetime...I can't even remember what it's like to taste food. I'm just wondering, I've seen that this could be caused by a zinc deficiency? Coincidently I had just started taking zinc when the covid symptoms started so I was taking it, but now that I've actually started researching it apperently a certain form of zinc (I believe it was a nasal spray) had caused permenant loss of smell for many people so now I'm kindof hesitant to even take the pills...So confusing!!!”
“just wanted to share my story before I leave this group to provide hope to people. I got COVID symptoms April 1st (weakness, fatigue, feverish, dry cough) and woke up April 4th with zero taste or smell. I was never actually tested. I had 5 days with absolutely nothing (which was absolutely horrible, I can't even imagine people who have to deal with that for more than a month it was literally all I thought about) then I was finally able to get a tiny whiff of one of my essential oils (lemon grass haha) which gave me hope that it was not permenant. It was soooo slow coming back, like I would say it only improved max 2% a day. It is only yesterday that I realized I think I am finally at 100% back to normal, so I would estimate it took a month to slowly come back. Throughout that month I would wake up almost every day with that phantom “chemically plasticy burning” smell/sensation which gradually reduced in strength, I do remember smelling it only a few days ago. Now I guess my recovery is sort of on the fast side, which I would attribute to my healthy lifestyle. I generally eat a plant focused diet, with minimal meat, dairy and processed foods. Since I was sick I have had barely any alcohol and obviously no smoking. In the beginning I was taking vitamins daily such as vit C, D, zinc and oil of oregano. I also tried to incorporate many anti-inflammatory foods into my diet such as tumeric, garlic, ginger. Who knows how much this actually helped but I'm sure it didn't hinder.”
The last example is of a patient who has not recovered their senses yet. The dates shown in
“March 13th - sudden and complete loss smell and taste. Before that date I have been suffering some headaches. March 16 to 18 – fatigue and dizziness. Now I feel ok physically but smell and taste is still gone. After 12-13 days later I was able to smell coffee grains but faintly. My testers are coffee, vicks, perfume for sniffing. I’m about 10% and it comes and goes back. Taste was completely gone I could not even identify salty, spicy etc. Now I can identify them but flavor is missing. I feel 15-20% improvement but not so sure.”
“I could smell Vicks around day 15-16. Now in day 20. Coffee, garlic, mint etc. are OK but rest is not good”
“Day 32 still weak. It comes and goes even during the day. Early mornings and evenings are worse. Still need to get close to be able to smell and taste is way behind.”
“Hi all! It has been around 10 weeks for me and I cannot even say the percentage :) How do you define it? For example, I feel 100% for mint, coffee or other strong things but 0% for basil interestingly - once upon a time it was my fav :D Besides, all bad smells are totally gone. Sometimes I can smell strong smells in the air - if there is garlic in the food for example. And as many others I'm experiencing fluctuations hour by hour and day by day. Still feel improving but sometimes I feel quite desperate and it's really diffucult to stay always postive! Good luck to all of us!”
The year 2020 has become a tragic year with the pandemic that has over 67 million cases and over 1.54 million deaths worldwide as of December 6, 2020. At the early stage of the pandemic, many suspected COVID-19 patients could not get tested because of the overwhelming number of patients with severe conditions at the hospitals. This suggests that the actual number of patients with COVID-19 could be far more than the officially reported number. Many of the suspected COVID-19 patients with mild to moderate symptoms self-isolated themselves without medical treatment. These suspected COVID-19 patients had to depend on the internet to obtain information, and many of them joined membership groups on social media, which were founded to support patients with COVID-19.
In this study, we analyzed the information in the social media database of suspected COVID-19 patients, with particular attention to their olfactory and gustatory dysfunction. About 70% of them could not get tested at all or could not get tested immediately and received the antibody tests later. Furthermore, about 90% of them either stayed at home with generic medicines or supplements, or stayed at home without any medicines. These results suggest the limited access of the patients with mild to moderate symptoms to medical services. In the aspect of olfactory and gustatory dysfunction, it was demonstrated that patients who were asymptomatic other than the senses comprised about 15% of patients. Recovery of the senses was higher in the patients who were asymptomatic besides having anosmia and ageusia. Most patients experienced other symptoms first and then lost their senses, on average, 4.2 days later. Patients without other symptoms tended to recover earlier (
Through the analyses of the reports, we have noticed the benefits and limits of using social media (
(Patient) Possible to post
(Patient) Patients who have mild/moderate symptoms can obtain and exchange
(Patient) Patients who have mild/moderate level of symptoms can
(Patient) Possible to join from anywhere in the world if there is access to internet
(Researcher) If the number of members increase, it is possible to obtain large numbers of data
(Researcher) Possible to understand the patients’ conditions, emotional responses, their experiences with their doctors from their posts
(Patient) Possibility to join is limited to the areas where there is access to internet and to countries without federal restrictions to join internet groups
(Researcher) There is no control group
(Researcher) Some people are tested for COVID-19 and some are not, and we do not know which person is tested by the reports unless the person writes this each time
(Researcher) Cannot get the same people to respond to each poll
(Researcher) Everything is based on self-reporting and it is difficult to get precise information on the symptoms to diagnose
(Researcher) Members often leave without notification and it is difficult to follow up
Among the symptoms, we especially focused on smell and taste dysfunction, which is now known as one of the major biomarkers of COVID-19. The use of social media allowed members to join the group from around the world. Although there is a limit in the range of information that can be obtained through social media (eg, accurate diagnosis of the patients), the use of it enabled us to obtain the symptoms and the progression of these symptoms from the patients who did not or could not visit the hospitals.
The current analysis demonstrated that about 90% of the 355 patients in the
The pathophysiology of human olfactory dysfunction is divided into three major categories. One is an airflow problem, where the airflow toward the olfactory cleft is blocked by mucosal swelling or mucus hypersecretion [
Our analysis also demonstrated that the smell problem of patients with COVID-19 tends to recover sooner when the patients only have smell dysfunction, not multiple COVID-19 symptoms. The reason for this finding is unclear, but one possible explanation is that, for the outpatients without access to medical treatments, recovery from olfactory dysfunction is faster if the patients have a lower viral load and therefore fewer symptoms. In other words, olfactory dysfunction may be one of the most sensitive indicators of SARS-CoV-2 infection. In fact, the percentage of patients showing anosmia or ageusia was especially high in the asymptomatic to mild level patients [
As described in this study, social media can become an important platform to collect data from outpatients, especially in the era of infectious disease pandemics, when hospitals are overwhelmed with patients that have severe conditions and patients with mild or moderate symptoms are often overlooked. Following the outbreak of COVID-19, virtual visits to doctors have started to become more popular, which can provide medical service without in-person visits. The benefits of social media are that patients can post their symptoms and questions whenever they are in need without appointments and can receive responses from the public, either patients, nurses, or doctors, through the internet, which enables real-time monitoring of the infected condition, patient symptoms, and the clinical course. In the United States, there is a project called DETECT, which uses a smartphone and a wristband to sense changes in the heart rate, which can be an indicator of changes in health conditions [
Our analysis of a social media database of COVID-19 patients’ posts demonstrated that olfactory dysfunction of a large portion of patients with COVID-19 persisted at least several weeks to months. This information is important in understanding the pathophysiology of COVID-19–induced anosmia. Although accurate diagnosis of patients is not always obtained with social media–based analysis, 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.
Our study explores the benefits and limits of using social media membership groups in studying the symptoms of COVID-19. The patients are suspected COVID-19 patients and not all of them have been tested for COVID-19, but all have experienced loss of the senses of smell and taste.
This is the first study to determine the benefits and limits of using social media in studying the symptoms of COVID-19.
Social media membership groups can function as a source of information and mental support for patients with COVID-19. Although some improvements in the system are necessary for its use for research purposes, it is a rare source of a large amount of data for researchers as well.
Centers for Disease Control and Prevention
World Health Organization
SK would like to express her special gratitude to Dr Amy Poehlman who edited the English of the paper and provided comments. SK would like to thank Christine Kelly, the founder of the social media membership group
None declared.