A novel virus, like COVID-19, will require years of research and data before experts can understand all aspects of it. While many studies are focusing on treatment and prevention, fewer studies are discussing the symptoms and recovery process for COVID-19 patients. 

No one knows more about the side effects of COVID-19 than the people who have experienced it themselves. A patient-led study conducted in 2020 analyzed the symptoms and recovery process of those who experienced prolonged COVID-19 symptoms.*

What they did

There were 640 participants recruited between April 21, 2020, and May 2, 2020. Due to the severe lack of testing and the prevalence of false negatives, the researchers found it important to focus on recruiting patients with prolonged symptoms regardless of COVID-19 testing results. 

The breakdown of participants was:

• 23.1% COVID-19 positive 
• 27.5% COVID-19 negative
• 47.8% untested

The participants were all knowledgeable in research practice and worked together to:

• Aggregate and curate survey questions and symptoms
• Conduct analysis on the data collected from their answered surveys

What they found

An analysis of the survey resulted in the following conclusions.

Pre-existing conditions

• 57.8% of the participants had at least one pre-existing condition, with the most prevalent conditions being asthma and vitamin D deficiency.

Symptom strength and longevity

• 70% of participants experienced fluctuations in the type of symptoms and 89% reported fluctuations in the intensity of symptoms.
• Of the 9.4% of participants who had recovered, the average length of being symptomatic was 27 days.
• Participants who had not recovered reported experiencing symptoms for an average of 40 days.

Specific symptoms

• A slightly elevated temperature (between 98.6ºF and 100.1ºF) was more commonly reported than high temperatures (above 100.1ºF).
• In addition to common COVID-19 symptoms (fever/elevated temperature, cough, and shortness of breath), participants also experienced fatigue, brain, fog/concentration challenges, chills/sweats, trouble sleeping, and a loss of appetite. 
• Neurological symptoms, like brain fog/concentration challenges and trouble sleeping, typically lasted the longest and are more common than the media reports.

Amount of care needed

• Most of the participants were not hospitalized, but many did visit an emergency room or urgent care. 

Activity levels 

• Most participants reported a major decline in physical activity. Before being symptomatic, 65% reported they were very/moderately physically active. At the time of the survey, 65% reported being sedentary or mostly sedentary. 

Top 10 symptoms

The top 10 ongoing symptoms, ranked from highest to lowest, were:

• Mild shortness of breath
• Mild chest tightness
• Moderate fatigue
• Mild fatigue
• Chills or sweats
• Mild body aches
• Dry cough
• Elevated temperature
• Mild headache
• Brain fog/concentration challenges

What it means

This study is a great first step in understanding the symptoms and recovery process of COVID-19. Researchers admit certain areas were lacking and that future similar studies should focus more on:

• Improving the questionnaire as symptoms become better understood
• Investigating relapse triggers among participants
• Investigating mental health side effects 
• Improving analysis
• Improving diversity in regards to gender, ethnicity, and socioeconomic status of the patients included

*Assaf, G., Davis, H., McCorkell, L., Wei, H., et al. (2020, May 11). Report: What Does COVID-19 Recovery Actually Look Like? Patient-Led Research for COVID-19. https://patientresearchcovid19.com/research/report-1/

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.