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Citizen Scientists Take on the Challenge of Long-Haul COVID-19

Posted on by Dr. Francis Collins

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Credit: iStock/Poike

Coronaviruses are a frequent cause of the common cold. Most of us bounce back from colds without any lasting health effects. So, you might think that individuals who survive other infectious diseases caused by coronaviruses—including COVID-19—would also return to normal relatively quickly. While that can be the case for some people, others who’ve survived even relatively mild COVID-19 are experiencing health challenges that may last for weeks or even months. In fact, the situation is so common, that some of these folks have banded together and given their condition a name: the COVID “long-haulers.”

Among the many longer-term health problems that have been associated with COVID-19 are shortness of breath, fatigue, cognitive issues, erratic heartbeat, gastrointestinal issues, low-grade fever, intolerance to physical or mental activity, and muscle and joint pains. COVID-19 survivors report that these symptoms flair up unpredictably, often in different combinations, and can be debilitating for days and weeks at a time. Because COVID-19 is such a new disease, little is known about what causes the persistence of symptoms, what is impeding full recovery, or how to help the long-haulers.

More information is now emerging from the first detailed patient survey of post-COVID syndrome, also known as Long COVID [1]. What’s unique about the survey is that it has been issued by a group of individuals who are struggling with the syndrome themselves. These citizen scientists, who belong to the online Body Politic COVID-19 Support Group, decided to take matters into their own hands. They already had a pretty good grip on what sort of questions to ask, as well as online access to hundreds of long-haulers to whom they could pose the questions.

The citizen scientists’ group, known as the Patient-led Research for COVID-19, brought a lot of talent and creativity to the table. Members reside in the United States, Canada, and England, and none have ever met face to face. But, between their day jobs, managing time differences, and health challenges, each team member spends about 20 hours per week working on their patient-led research, and are now putting the final touches on a follow-up survey that will get underway in the next few weeks.

For their first survey, the group members faced the difficult decision of whom to contact. First, they needed to define long hauler. For that, they decided to target people whose symptoms persisted for more than 2 weeks after their initial recovery from COVID-19. The 640 individuals who responded to the survey were predominately white females between the ages of 30 to 49 who lived in the United States. The members said that the gender bias may stem from women being more likely to join support groups and complete surveys, though there may be a gender component to Long COVID as well. About 10 percent of respondents reported that they had ultimately recovered from this post-COVID syndrome.

Another important issue revolved around COVID-19 testing. Most long-haulers in the online group had gotten sick in March and April, but weren’t so sick that they needed to be hospitalized. Because COVID-19 testing during those months was often limited to people hospitalized with severe respiratory problems, many long-haulers with mild or moderate COVID-like symptoms weren’t tested. Others were tested relatively late in the course of their illness, which can increase the likelihood of false negatives.

The team opted to cast a wide investigative net, concluding that limiting its data to only people who tested positive for COVID-19 might lead to the loss of essential information on long-haulers. It turns out that half of the respondents hadn’t been tested for SARS-CoV-2, the virus that causes COVID-19. The other half was divided almost equally between those who tested positive and those who tested negative. Here are some highlights of the survey’s findings:

Top 10 Symptoms: Respondents were asked to rank their most common symptoms and their relative severity. From highest to lowest, they were: mild shortness of breath, mild tightness of chest, moderate fatigue, mild fatigue, chills or sweats, mild body aches, dry cough, elevated temperature (98.8-100), mild headache, and brain fog/concentration challenges. Highlighting the value of patient-led research, the team was able to assemble an initial list of 62 symptoms that long-haulers often discuss in support groups. The survey revealed common symptoms that have been greatly underreported in the media, such as neurological symptoms. These include brain fog, concentration challenges, and dizziness.

Making a Recovery: Of the 60 respondents who had recovered, the average time to recovery was 27 days. The respondents who had not recovered had managed their symptoms for 40 days on average, with most dealing with health problems for 5 to 7 weeks. The report shows that the chance of full recovery by day 50 is less than 20 percent.

Exercise Capacity: About 65 percent of respondents now consider themselves mostly sedentary. Most had been highly physically active before developing COVID-19. Many long-haulers expressed concern that overexertion causes relapses

Testing. Respondents who reported testing positive for SARS-CoV-2 were tested on average earlier in their illness (by day 10) than those who reported testing negative (by day 16). The team noted that their findings parallel those in a recent published scientific study, which found false-negative rates for current PCR-based assays rose as the time between SARS-CoV-2 infection and testing increased [2]. In that published study, by day 21, the false-negative rate reached 66 percent. Only two symptoms (loss of smell and loss of taste) occurred more frequently in respondents who tested positive; the other 60 symptoms were statistically the same between groups. The citizen scientists speculate that testing is not capturing a subset of COVID patients, and more investigation is required.

Since issuing their survey results on May 11, the team has met with staff from the Centers for Disease Control and Prevention and the World Health Organization. Their work also been mentioned in magazine articles and even cited in some papers published in scientific journals.

In their next survey, these citizen scientists hope to fill in gaps in their first report, including examining antibody testing results, neurological symptoms, and the role of mental health. To increase geographic and demographic diversity, they will also translate the survey into 10 languages. If you’re a COVID-19 long-hauler and would like to find out how to get involved, there’s still time to take part in the next survey.


[1] “What Does COVID-19 Recovery Actually Look Like?” Patient-led Research for COVID-19. May 11, 2020.

[2] Variation in False-Negative Rate of Reverse Transcriptase Polymerase Chain Reaction-Based SARS-CoV-2 Tests by Time Since Exposure. Kucirka LM, Lauer SA, Laeyendecker O, Boon D, Lessler J. Ann Intern Med. 2020 Aug 18;173(4):262-267.


Coronavirus (COVID-19) (NIH)

Patient-led Research for COVID-19


  • phyllis m-d says:

    I am 5 months out from having COVID. Still cannot taste many foods, still have a smell of smoke 24 hours a day, sometimes less than others. The fatigue persists

  • Victoria V. says:

    I have written before having suffered brain inflammation leading to hypomania, irritability, memory loss following an infection in mid November. Post COVID symptoms in January – February included headache between bridge of nose, bloody nose left nostril (not taking ASA or NSAIDs), high HR/BP anxiety, and brain fog. March symptoms included taste being metallic, smell of dust on occassion, tingling teeth and a dental visit revealing inflammed gums (always had normal dental check-ups) even though I started flossing daily following COVID knowing I needed to do everything I could to slow down the inflammation process. I donated blood in February and have antibodies. What does the NIH recommend for long-haulers and vaccination when symptoms (that may show viral particles still causing problems?) still exist. It seems some of us experienced an over-reaction to COVID-19. Is one vaccination preferrable for others still experiencing symptoms?

  • Carlyn G says:

    I had COVID in April 2020, and then again (milder) in October 2020. I was not terribly ill; I did not get to be tested (not available in my area zip code. I did not run a high fever. I had shortness of breath, but had an oxygen concentrator on hand. I had body aches, profound fatigue, very vivid dreams, a cough, a bad headache. A month or so after the first incident, I realized that I could not put the correct amount on a check when told, because the “tens and hundreds places, etc., were confused. I also could not determine the date sometimes. I could not subtract 400 years from the December date of the “Christmas Star,” because I thought it was 1920, and I subtracted 40 from that and got that the last time it appeared was in 1880. I was nonplussed to discover it had last appeared in the Middle Ages. I might add that I previously had a very high IQ, so it seemed very strange.

  • Janardhana Reddy says:

    Thank you for Providing Such an Informative Article. Kindly Share Such an Article. This Article provided me a lot of information During Covid 19.

    • Deborah H. says:

      “Coronaviruses are a frequent cause of the common cold. Most of us bounce back from colds without any lasting health effects. So, you might think that individuals who survive other infectious diseases caused by coronaviruses—including COVID-19—would also return to normal relatively quickly.” You would think it unless you were privy to the decades of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME’/CFS) which is both commonly initiated by viral triggers such as colds and has symptoms that have been compared by many to long-COVID? ME/CFS patients have been commenting on this thread for months. It is so odd that scientists won’t even say our disease name or be willing to even discuss the obvious comparison.

  • Eileen O says:

    I live in Canada. I just happened onto your site. Our whole family got COVID IN March 2020. I am 75 and have had shortness of breath which is debilitating. My CT scan shows no lung disease. Pulmonary functions are abnormal. My respirologist said he knew nothing about COVID and referred me to a post COVID clinic. Today was my first drs appointment. I was very discouraged after the call. He said “Your shortness of breath has nothing to do with COVID” I told him my granddaughter and her dad both also had shortness of breath and the dad was diagnosed with asthma related to COVID. It has been 2 years and the lung issues for all of us remain.
    Does anyone know any more about the long term COVID shortness of breath?

    • mary f. says:

      I have Long Covid 21 months now. No breathing problems – but an array of other issues. I work with a woman who also has Long Covid and I spoke to her just yesterday telling me about her shortness of breath she has now. From what I have read and heard its pretty common with Long Covid. I would find a doctor who has “some” experience with long covid. An infectious disease doctor. Its the first thing I ask when making an appointment. Otherwise don’t waste your time.

  • Victoria V. says:

    Greetings! Writing for the 3rd time following COVID in November 2020. This post marks 13 mos. since recovering from a mild infection with symptoms of headache, myalgia, and brain fog, and loss of taste and smell. Although most of my symptoms have subsided I still have a tingling of the distal 1/4 of my tongue (all of the time), when worse it feels like a scorched tongue. I am in very good physical shape for age 65, play tennis 3 hours/week, walk long distances, bicycle and practice yoga. One tennis match found me breathless with a high HR >120 (normal around 68), feelings of anxiousness, and needing to sit to recuperate. I had high heart rates back in January which were treated with propanolol. I’d like to see these comments incorporated into long COVID research. We’re still not seeing a very good longitudinal picture of post COVID syndrome.

  • leslie JOnes says:

    Here’s what I want to know.. WHY DO SOME FAMILY MEMBERS HAVE THE EXACT SAME LONG COVID symptoms when it comes to Long covid taste and smell issues? Meaning we each find the same foods offensive in smell, that never were before, things that used to taste good, taste like chemicals now, like candy, anything with soy, reeks, perfumes stink, cat bowel movements smell like the same smell in coffee, etc.. bread smells bad when in toaster, eggs in pan are gross, chicken, etc.. Gotten down to eating VERY FEW items.. mostly all pure, like apples, carrots, bannanas, vegs.. no processed, and NOTHING with soy or soy bi-products.. This has been going on since MARCH 2020.. not getting ANY BETTER…Gotta be some sort of genetic link that family members have.. NO ANSWERS.. nada.. BEST THING for weight loss though.. sadly…. you can tell those who are suffering.. they all buy the same products at the store, and are thin thin thin…

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