Why we wrote this article and the research behind it
Since the development of the coronavirus COVID-19 pandemic in late 2019 - early 2020, millions of people became infected with this novel disease. While many experienced dramatic episodes of illness, 40% were infected but without any symptoms.
We wrote this article as a comprehensive guide to help the public better understand the following concepts:
What are the symptoms of COVID-19?
The difference between symptoms and long-term side effects
What are the long-term side effects and long-hauler syndrome
How long will the symptoms last?
Where to get help and support
How to avoid getting infected from COVID-19?
Our Research: The research team at Mira conducted a poll in a Facebook group titled CORONAVIRUS SURVIVOR CORPS,which is a platform for those who have been impacted by COVID-19 to share their experiences. The question in the poll was “Which of the following best describes any side effects you have experienced after recovering from COVID-19?” Respondents were able to add options to the poll and check off multiple options that describe their symptoms. Data was recorded after about 48 hours. The survey had 57 respondents and the results are summarized in a graphic featured in this article.
Other Research: This article also delves into the results of several other surveys on coronavirus survivors. A study titled COVID-19 “Long Hauler” Symptoms Survey Report, conducted by Dr. Natalie Lampert and Indiana University School of Medicine, was referenced in this article. This study surveyed over 1,567 individuals in a Facebook group titled Survivor Corps, which connects and educates patients, doctors, and researchers impacted by COVID-19. The question in the poll was “If you consider yourself a Long Hauler, please let us know which symptoms you have experienced / are experiencing.”
Additionally, data from a study titled Confirmed Case Long-Hauler Only Survey, conducted by Karyn Bishof - B.S. in Exercise Science and Health Promotion, was used in our review. This study surveyed 1,500 individuals who identify as COVID-19 “Long Haulers”.
Interview: We also conducted research by interviewing Allie Iamonaco, age 21, who was diagnosed with coronavirus and is still experiencing symptoms after testing negative for the virus.
According to a sample taken by the World Health Organization, the most reported symptoms include
dry cough (57%),
loss of ability to smell (25%).
Coronavirus COVID-19 impacts each person differently and symptoms can be mild, moderate, or severe. Symptoms typically appear between 2 and 14 days of exposure; however, some individuals may not experience symptoms at all. For this reason, it is highly important to wear a cloth face covering, practice social distancing, and maintain good hygiene even if you are not experiencing symptoms.
According to the CDC, common symptoms of coronavirus are: fever, chills, nausea, shortness of breath, muscle aches, fatigue, sore throat, loss of smell or taste, vomiting, diarrhea, headache, congestion and runny nose.
See our article featuring a pulmonologist to understand what shortness of breath feels like and how it feels to have coronavirus. If you feel ill and are experiencing any of the aforementioned symptoms, it is recommended that you seek medical attention and get tested if possible in your region. There are two main types of test: the PCR test and antibody test. See our article for more information regarding which test is best for you.
Initial symptoms versus long-term side effects
Onset symptoms: onset symptoms are what people experience during the duration of a health condition/infection. For example, after getting infected, it may take a few days for you to feel feverish. It is currently unknown how many people are asymptomatic carriers of coronavirus; however, the CDC’s best estimate for the percentage of people who are asymptomatic carriers is 40%. Those who never present with symptoms can still transmit the virus.
Post-COVID long-term side effects: after making a recovery from coronavirus, some individuals still experience long term side effects from the virus. In this article, we explain some of the most common long term effects from COVID-19 infection and present data from several surveys.
What are long-term side effects and who are the coronavirus "long-haulers"?
Long term effects are health issues that are caused by an illness, disease, or treatment that last for several months or years after infection. Long-term effects can be physical, mental, or emotional and can occur even if the initial illness or disease is no longer present in the body.
Individuals who have been experiencing long-term effects from coronavirus are identifying themselves as coronavirus “long-haulers” or “long-termers”. There is not conclusive research pointing to reasons why some people experience long-term effects. Long-haulers may experience long-term effects on their cardiovascular, respiratory, nervous, digestive, endocrine, and integumentary systems.
How long will coronavirus symptoms last?
According to the Confirmed Case Long-Hauler Survey of 1,500 individuals, 82% of respondents reported symptoms lasting over two months, 41.9% of respondents experienced symptoms for over three months and 12.5% of respondents experienced symptoms for over four months. Allie Iamonaco explains that she has been experiencing a fever and chest pain among other symptoms for over 100 days.
The duration of COVID-19 varies depending on the case. Individuals with a mild case will likely recover within one to two weeks. However, those with more severe cases may experience symptoms for several months.
Johns Hopkins Medicine explains that you may re-enter society once you have experienced all of the following: three days without fever, 10 days since initial symptoms., improving symptoms. Additionally, if you get tested twice, over 24 hours apart, and test negative both times you may resume contact with other people.
What are the common long-term COVID-19 effects?
After making a recovery from the Coronavirus COVID-19, many individuals still experience long term side effects from the virus. It is uncertain who will experience long-term effects from coronavirus and the duration of these side effects. Therefore, it is important to continue wearing a mask and practicing social distancing to avoid potential long-term effects from the virus.
According to recent studies, some of the most common “long-hauler symptoms” or long term side effects from the virus include: respiratory issues, post-infection fatigue syndrome, post-intensive care syndrome, blood clots, and muscle aches. Note: many of these are preliminary studies where data was collected in the form of surveys. Most publications on this matter have not been peer reviewed yet.
Post-COVID Fatigue Syndrome
According to the survey done by Indiana University School of Medicine, the most common long-hauler symptom is fatigue. Additionally, 91% of respondents in the Confirmed Case Long-Hauler Survey of 1,500 individuals reported that they experienced extreme and chronic fatigue.
The CDC refers to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a significantly lowered ability to do activities that were usual before the illness. Many individuals with ME/CFS also experience sleep issues and problems with thinking and memory.
Allie Iamonaco explains “a strange and annoying ongoing symptom is the brain fog - when I’m talking I have trouble finding the word I mean to say - like everything is on the tip of my tongue which gets frustrating.”
Muscle and Body Aches
According to the survey done by Indiana University School of Medicine, the second most common long-hauler symptom was muscle or body aches. Some individuals report that this pain occurs in the lower back and is usually sharp. These body aches can be differentiated from an injury in that they are typically accompanied by fatigue and other symptoms.
A survey done by Indiana University School of Medicine reveals that the third most common long-hauler symptom is shortness of breath or difficulty breathing. In our survey, over 60% of respondents reported respiratory issues. According to Johns Hopkins Medicine, COVID-19 results in initial damage to the lungs and scarring.
The damage to the lungs caused by infection with COVID-19 can take between 3 months and 12 months to heal. This may result in compromised respiratory function during this period of time. The severity of the disease, pre-existing health conditions, and treatment all affect the extent of lung damage.
Many individuals who had COVID-19 and recovered have been experiencing heart-related complications. Allie Iamonaco, coronavirus survivor, explains that her “worst ongoing symptom is chest pain and tachycardia, still with light activity my heart rate will soar to 160-170 and usually trigger shortness of breath and fatigue as a result.”
Johns Hopkins Medicine explains that heart damage from COVID-19 can occur due to a lack of oxygen, inflammation of the heart (myocarditis), or stress cardiomyopathy. Based on a study done at University Hospital Frankfurt in Germany, it appears as if heart damage is independent of the severity of the COVID-19 case.
Post-Intensive Care Syndrome
Individuals who were hospitalized in an Intensive Care Unit from any disease, including COVID-19, are at higher risk for delirium, or confusion, problems paying attention, and issues with concentration.
These symptoms typically last for 3-9 months after spending time in the hospital. Many patients described issues with short-term memory, learning new information, and comprehension.
A study published in April 2020 found that of 184 ICU patients with COVID-19 induced pneumonia, 31% had thrombotic complications, where blood clots create blockages in veins and arteries.
According to Weill Cornell Medicine, ICU patients who have been given blood thinners continued to develop blood clots that included Deep Vein Thrombosis (DVT), clots in the legs, lungs, and cerebral arteries. Doctors are currently working on alternative treatments for these blood clots.
Story from a coronavirus survivor
Below is a Question and Answer with Allie Iamonaco where she explains her experience with COVID-19.
Q: How long ago did you have coronavirus and how long did your symptoms last?
A: “I got COVID on March 22nd when I had to fly home from my study abroad because the US was closing the border. I started experiencing symptoms on March 31st, and I am still experiencing symptoms 114 days later.”
Q: Did you get tested and what type of test did you get?
A: “At the time I couldn’t get a test because they weren’t readily available but my doctor diagnosed me with Covid due to all my symptoms matching it. Approximately 3 weeks later I was able to get tested and tested negative but was told that was likely the result because the test was so far removed from initial symptoms. I got a nasal swab test.”
Q: What effects did you experience or are you currently experiencing?
A: “My initial symptoms were a fever of about 100-101, chills, crazy fatigue (sleep 14+ hours then need a nap in the day, unable to do much but lie in bed), shortness of breath (had to take breaths in the middle of sentences), intense chest pain, tachycardia (heart rate over 140 when standing/ doing light activity), nausea, lack of appetite, lack of smell, muscle and joint pain, brain fog/confusion, migraine. Now, over 100 days later my main issues are: still having a fever of about 100 now for 100 days, though it only spikes a few times a day now rather than being constant. My worst ongoing symptom is chest pain and tachycardia, still with light activity my heart rate will soar to 160-170 and usually trigger shortness of breath and fatigue as a result. A strange and annoying ongoing symptom is the brain fog - when I’m talking I have trouble finding the word I mean to say - like everything is on the tip of my tongue which gets frustrating. I still get migraines and some other pain but the only ongoing symptoms that really still affect me are fever and heart related issues. Most doctors appointments have concluded that this is just “Post Covid Syndrome” or Covid running its course but I had some bloodwork show a high ANA level which usually indicates an autoimmune disease so I went for additional tests to see if Covid triggered an autoimmune disease. I haven’t gotten the results back yet.”
Q: What advice would you give to people who have not gotten coronavirus?
A: “Before Covid, I was a healthy 21 year old with no underlying issues and extensive testing after the fact has not detected an underlying problem that is causing these extensive complications from Covid. So this could happen to anyone. I urge everyone - especially young people - to take this as seriously as possible. I am so thankful to be seeing improvements and to never have needed extensive hospital care / ventilation etc. so I think I’m still a mild/moderate case. But this is not something you’re guaranteed to bounce back quickly from just because you’re young and healthy — this disease has completely incapacitated me for almost 4 months, and has had me feeling like each system in my body is shutting down with symptoms ranging from neurological to gastrointestinal. This completely took me out — there were nights where I was so scared to fall asleep because all I felt was pain, and my parents would walk by my room as I was sleeping to check I was still ok. Even if your state is opening, take any precautions possible to protect yourself from this because trust me, you do not want to experience it. Wear a mask, minimize the number of people you come in contact with, and avoid putting yourself in unessential danger. I know we all want life to go back to normal to see and hug our friends, but putting your social life semi-on hold may be the thing that saves you from this. So please, consider it. And stock up on vitamins!”
Where can I find support for dealing with COVID-19 side effects?
Extended periods of social distancing and physical isolation, coping with the loss of a loved one, and recovering from illness can all put strains on our mental and emotional wellbeing. According to the U.S. Department of Health and Human Services, the stress of a pandemic often results in the following: difficulty with concentration, irregular sleep patterns, heightened stress, worsening of preexisting chronic and mental health problems, and fear about getting ill.
Below are tips for maintaining mental health, adapted from a video talk with Gordon, The National Institute of Mental Health.
Avoid using alcohol and drugs as coping mechanisms
Explore yoga, meditation, breathing exercises, and other wellness activities
Stay connected with friends and family by talking on the phone, getting together outside at 6 feet apart, and joining large zoom gatherings
Don’t hesitate to seek help if you are having trouble coping with the changes brought about by COVID-19
The Disaster Distress Hotline provides support for people dealing with emotional distress from a disaster.
Text TalkWithUs to 66746
National Suicide Prevention Hotline assists people who are worried about a friend, family member, or thinking about suicide
NYC Well connects individuals with a free mental health counselor
Text WELL to 65173
Facebook groups: These groups aim to provide resources and support for coronavirus survivors. Survivors are able to post about shared experiences, get resources, and ask advice.
Survivor Corps is a public Facebook group with about 85.5k members.
CORONAVIRUS SURVIVOR CORPS is a private Facebook group with about 8k members.
How to avoid getting the virus
Since there is so much unknown information regarding long-term implications of COVID-19, it is advised that you continue to take precautionary measures to reduce your chances of contracting the virus.
Wear a mask: the director of the CDC recently noted that if everyone wears a mask, the spread of the virus can be controlled within a matter of several weeks. In general, you should wear a cloth face covering when indoors and in outdoor settings where social distancing is not possible. For more on what type of mask is best for you, when you should wear a mask, and the science behind wearing masks, see our article here
Avoid large gatherings: large gatherings have been deemed superspreader events - where one individual infects a disproportionately large number of people with coronavirus. In one case, a single individual infected 52 others at a 2.5 hour gathering in Washington. Additionally, indoor gatherings with poor air ventilation are conducive to the spread of the virus. A study in Japan found that individuals were 18 times more likely to contract the virus in an indoor environment. As the number of people at a gathering increases, so does the likelihood of contracting COVID-19.
Wash your hands: washing your hands with soap and water for 20 seconds or using hand sanitizer with at least 60% alcohol may reduce the spread of COVID-19. It is highly recommended that you clean your hands in the following situations: after returning home from a public place, after shaking hands with others, after using the bathroom, before, during, and after food preparation, before eating, after coughing or sneezing. This is not a comprehensive list of all times you should wash your hands, but general guidelines in light of the pandemic.