Citizen Scientists Take on the Challenge of Long-Haul COVID-19
Posted on by Dr. Francis Collins
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.
References:
[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.
Links:
Coronavirus (COVID-19) (NIH)
I was in the hospital with diagnosed Covid in March, severe double pneumonia and very high fevers. I was released after nine days and have since been suffering with intermittent severe fatigue and extreme body aches several days a week which are completely disabling. All of my blood work has been fine for the last three months and I’m wondering about the extreme fatigue and the muscle aches, has anyone suffered this long with those symptoms.
I’m experiencing the same kind of fatigue as well. Been cleared from COVID since August 5. I did blood work in July when I was sick. And blood work again two weeks ago. All came back good. I went to another physician and he ordered some other blood tests that they don’t do on regular blood work. I’m waiting for those results.
Does anyone have problems with blood oxygen levels?
Thank you for this informative article. What is the risk of future coronavirus vaccine will trigger some of the ” Long-Haulers ” symptoms as chronic side effects?
Byron M, a pretty significant (almost “runaway”) attack on the lungs and body would have to happen for that. That is not how vaccines act. Vaccines stimulate the immune response, but even a live virus vaccine would not launch an attack on the body at the scale that the coronavirus does.
My 21 yo daughter had 1st dose Moderna vaccine last week. About 6 hours later she was excessively tired (sleeping on the floor tired), this lasted ~24 hours then she was fine. On the 5th day after the vaccine she developed a terrible sore throat, swollen white tonsils, swollen lymph nodes and is unable to swallow. She had mono / EBV years ago but appears to have a reactivation caused by the vaccine. The vaccine must cause immunosuppression severe enough to allow reactivation. She is reporting as an adverse event.
I’m one of the March suspected COVID cases. Could not get tested because I was considered not high risk or over 65years. Was in quarantine from my job until all my symptoms resolved, around 28 days. It’s now October. I have a lingering cough that won’t go away. I wheeze and cough on and off at night. I now get random 3 to 4 day Headaches every couple months. I am constantly clearing my throat of phlegm that sometimes impairs my voice when trying to speak when at work.
Virginia, I wish you a better recovery. Have your doctors/providers discussed lung rehabilitation exercises?
I was sick Sept 14th and tested positive for the antibody on October 9th. I had been sick in the Spring as well but unable to get tested – the same as many mention here. I have Epilepsy, Sleep Apnea (recently discovered) and am 52 years old. Hot flashes started in the Spring after I had been sick for the first time. They were AWFUL. The brain fog too…. When I was sick the second time, the fatigue and brain fog seemed to drag on. I started investigating everything I could think of…… My OB/GYN put me on hormones – estrogen patch and progesterone. The brain fog began to clear almost immediately. Could it be that this virus messes with the hormones? I did also hear of a couple patients that were on vents at the University Hospital. They tried a med that does something with the thyroid – it was something they learned about after people died from the Swine Flu here. They did the research and saw what failed so I think I’m not crazy that it may affect hormone levels for some people. Interesting about EBV. I did have mono in High School so maybe that’s why it affected me more severely as well….
I am a Registered Nurse from the Midwest U.S. I have participated in the Nurses Health Study for 40 plus years and take very good care of myself in regards to nutrition, exercise, and mental health. I believe I had COVID -19 in early March 2020 following a flight to Arizona and travel to California for the Tennis Open in Indian Wells, CA. It was the first athletic event to be cancelled. My travel partner and I took precautions as this was very early on. We wiped down table trays on the airplane, wore masks and spent time with one couple for a period of 5 days (they never had symptoms). Upon returning home on March 12 we experienced frontal headaches with discomfort particularly near the bridge of the nose and forehead, minor sore throat, and body aches for several days. We were to get tested through a clinic on March 17 and waited for 2 hours to be tested only to be told that testing was now for emergency cases only. I participated in a CDC webinar in March as a representative of the Future of Nursing: Campaign for Action and stated that perhaps the CDC was misguiding citizens by mentioning only 4 symptoms: fever, cough, shortness of breath, and fatigue. It wasn’t until May 2020 that additional symptoms of COVID-19 were being shared. During the spring and summer I experienced significant anxiety, insomnia, photosensitivity (wore sunglasses to watch TV) and an increase in auditory sensitivity. I believe my brain became even more inflamed following an iatrogenic induced Serotonin Syndrome which I experienced in early October.
In November I again contracted COVID, my partner had it first and I showed symptoms within 3 days – we were both following mask and social distancing guidelines. An annual physical on Oct. 31 showed a Hgb A1C of 5.8 and abnormal pap and positive HPV (never had an abnormal pap or positive HPV in my life). I believe my body was in a state of stress from lack of sleep and the Serotonin Syndrome. I tested positive for COVID on Nov. 10 following a negative test on Nov. 7th. As a public health nurse I was certain I was infected. The virus targeted my weakest organ system – my brain. I experienced the same kind of headache I had in March along with mental confusion, fatigue, weakness, lack of energy, and continued insomnia (treated). I’m wondering what strain I may have had during round two. I suggested treatment of my anxiety and high pulse rate 115 (my normal is around 66 – 70) with propranolol. I am disappointed with treatment by the medical community – not showing much creativity in the treatment of long-hauler symptoms and try to label with other psychiatric diagnoses. My yawn reflex returned in mid January and my anxiety has started to be less problematic. I am now 3 mos. post infection and still have to tell this long story when seeking medical attention. I continue to have slight pressure in the bridge are of my nose (sometimes feels like Rice Krispies popping), occassional bloody nose (once a week), continued intolerance to light and sound, and very mild upper teeth ache throb which may suggest sinus inflammation. Through my own sleuthing, I have had my optic nerve examined by an optometrist – it showed no inflammation. I have taken Ibuprofen 200mg twice a day since the November infection and have taken fish oil for years.
To Victoria V. (Registered Nurse from the Midwest U.S). Sorry about your experience, I hope your recovery gets better.
If you are having nosebleeds weekly, why would you want to be on ibuprofen? If pain is the issue, is acetaminophen not working? Blood pressure normal? ENT exam normal?
Good luck.
The nosebleeds are very minor (little blood mixed with mucus). I notice it because it is outside my normal. Dry air could be a contributing factor. My physician is aware that I am taking a low dose NSAID. The pressure felt at the bridge of nose is not usually pain and so I don’t take Tylenol very often unless the pressure/crackles persist after a dose of Ibuprofen. My blood pressure is normal below 120/80. I have not had an ENT exam. I don’t seek extra medical care with a high-deductible healthcare.gov insurance plan. No benefits when working for non-profits. Thank you for replying to my post! I feel heard!
To Victoria V. (Registered Nurse from the Midwest U.S). Since the discomfort in the nasal sinus/frontal sinus area has lasted since March 2020, i.e. chronic, and you’ve excluded hypertension, maybe an ENT opinion will help. Depending on how much of a DIYer you are, or if symptoms tend to temporarily resolve after a warm shower, you can look into a neti pot. The pot is fairly low-priced at $8-15ish with saline sachets included, but most people hate how the saline solution runs in and out of the nose (and they have to also learn to do it right). Disclaimer – this is not to be considered medical advice. If not alleviated… ENT and they’ll likely ask for a radiology scan. Good luck!
Thanks. CT done 12/30 negative. Wondering if anyone else has prolonged HA and sinus symptoms post COVID?
I have had chronic fatigue and brain fog since last March (2020). I felt run down and had some headaches, but other than that, my biggest complaint is debilitating fatigue and brain fog. I can’t remember things. I was always very active and very sharp. I have been diagnosed with Epstein Barr – but other than that the doctors cannot find anything wrong with me. My liver levels are a little high, but I have been told that is from the Epstein Barr. I have had two antibody tests the past year with zero antibodies. But everything I read about, it sounds like I have long-haul covid symptoms. I just think its strange it all started right when Covid hit.
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
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?
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.
Thank you for Providing Such an Informative Article. Kindly Share Such an Article. This Article provided me a lot of information During Covid 19.
“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.
I am very impressed and hopeful you included this comment – but it is the only one of all the ones I have submitted over the last year that was included. I know at least four other people with ME/CFS who have commented too. Can you please put in my other comments and the comments of other ME/CFS patients who have used their precious energy to respond too?
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?
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.
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.
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, etc..coffee 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…