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)
COVID-19 is a curse. Nobody knows when it’s completely going to end.
Just want to express my admiration for this group of long haulers, spending their (now much more) valuable time on this project. Good luck and do report back.
The symptoms Dr Collins is blogging about are the same symptoms the people with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) live with everyday and are stigmatized by the name of Chronic Fatigue Syndrome. ME/CFS is also commonly triggered by a virus (but can be triggered by other events also) and there has been very little support to research it’s causes, ways to diagnose and how to treat. The ME/CFS community, that have been suffering for decades without hope of a cure, let alone a treatment. Dr Collins, please see that ME/CFS and Covid are more than likely the same syndrome. Please increase funding and/or look at what is already being researched, there are a lot of similar studies being done but they have been given different names. ME/CFS has a history of being severely underfunded by the NIH for research for how many people’s lives have been devasted by this illness.
Does COVID 19 cause Stevens Johnson Syndrome? From the beginning the symptoms are similar. My Stevens Johnson Syndrome symptoms were aggravated by a trip to the VAMC Black Hills, SD in Hot Springs, SD in late February. I visited with the motel owner for a couple of hours twice in the 2 day stay in Hot Springs. He had just returned from India by air.
On August 21, I did an ER visit because the cyanosis of my hands had worsened and I was nauseous. Both a quick test and a Health Department Test for COVID 19 were negative as well as a antibody test. My oxygen level was 94 -97. I was treated with a normal saline IV which improved me greatly for a couple of days. So I have no idea what has worsened my symptoms which is continuing at a much worse level than before February 27.
But it raises the question of does Stevens Johnson Syndrome affect the electrolyte balance? Is that the cause of long term residuals of Stevens Johnson and COVID 19?
Why are citizen scientists having to research COVID-19? I am speaking as someone who has endured ME/CFS for over 35 years and who has three kids who have had ME/CFS. The NIH should be recognizing the impact and prevalence of these diseases and providing commensurate funding and support instead of leaving it to disabled patients, their families, friends, and community. I appreciate what the Open Medicine Foundation, SolveCFS, Patient-led Research for COVID-19,… and other home grown groups are doing but they are filling a gap that the NIH should be covering. Even if NIH went down the wrong path initially with ME/CFS (for decades), they should be correcting course and helping find treatments or a cure for us and for our fellow long-term COVID-19 sufferers.
As a psychiatrist and psychotraumatologist working in Madrid, Spain, with 35 years of clinical practice, I very much think that the “psychosomatization” of initial COVID symptoms and – at the same time- a negativisation of tests makes clear that the mental helth variable is of great importance here.
Trauma / severe stress reactions / anxiety disorders include often a clinical picture that is to some degreee quite similar as the one described for so called long haulers in the article: “…shortness of breath, fatigue, cognitive issues, erratic heartbeat, gastrointestinal issues, low-grade fever, intolerance to physical or mental activity, and muscle and joint pains”. Is it pure “anxiety plus”, I would ask myself and others?
Often we forget that our alarm systems enhance all somatic reactions and symptoms that were present for another etiology and chronically well tolerated. In stress and insecurity times they come again to clearer expression because we hear our bodies “more and better”.
Despite of all these old knowledge in Medicine, we should not forget the psychosocial stress related to loss of work, death of relatives and a political and social situation in the whole world that is more that worrysome.
All in all, remain calm and try not to medicalize too much, please.
So you are saying they are all psychosomatic, Paco? You are saying my relief from a normal saline IV was psychosomatic? Perhaps you also believe my temporal lobe epilepsy is psychosomatic?
I’d rather believe the objective tests and treatment results. Treat for electrolyte imbalance and get results, then even if it is the psychosomatic start you have an electrolyte imbalance. No amount of talking is going to make that go away. Too many behaviorist think everything is psychosomatic.
It is always both Lemuel: “Psycho” AND “Somatic”. For me and you and for everybody. I care always for both parts. Very much hope you stay well!
I am not well. Whether COVID-19 tested too late (over 6 months) to be antibody positive or a Stevens Johnson relapse. I experience the problem of, “Many long-haulers expressed concern that overexertion causes relapses”. From my exercise days, I know the point to push to improve the following time. But that point makes me worse the following time and is keeping me sedentary. Short winded crossing the room but O2 level of 94-97 which doesn’t make sense. Therefore, there must be a vagus nerve or nerve center involvement to have difficulty breathing without an accompanied diminished oxygen level.
Or maybe those of us who were regular at exercising build up a need for a higher level of blood oxygen?
Check out the exercise studies on the long, long haulers – people with chronic fatigue syndrome – and then let’s talk about anxiety. That discussion has gone for decades in ME/CFS and the psychosomatizing has finally just about run its course. Unfortunately it took several decades of ME/CFS patients with it. Sad but not surprising to see it show up here.
I am telling you, it is not hypochondriasis. Psychosomatic illness is a real illness regardless of the effects of emotional stress on the pathophysiology. Long haul is a prolonged inflammatory reaction which focuses on the nervous system and causes exacerbation of damage in other organs in the inflammatory phase. It is disabling. You are wrong dear colleague. Don’t gaslight thee patients. Please be careful about assuming psychosomatic illnesses can be addressed as a mental health issue, we used to have the same misapprehension about peptic ulcers until H Pylori was discovered …
Nobody is speaking about “hypochondriasis” Denise S. Just you. I never used that word.
I repeat: I just want to remark that the so called mental or psychosocial or just human aspects of any illness, incluiding COVID 19, must be taken into consideration.
Paco unfortunately you did come across like that whether intended or not – it’s not particularly useful or helpful to feel that you are not believed when you are unwell. Of course mental health is important but let’s not forget that ME was only until recently thought to be of a psychosomatic origin and people had to fight hard for biomarkers to be found.
Kelly, read about stress induced hyperalgesia, please. It is not about malgingering or faking symptoms.
Covid 19, as any other stress and virus related illneses are frequently related with later fibromialgia.
Rheumatologists know very well about this.
Paco Orengo Garcia, u have the nerve to suggest all these people have some sort of Hysteria illness from Corona. It’s greedy people like you telling the public that this isn’t a biological after affect from Covid 19 but a somatic affect. It’s people like you that keep the REAL Doctors from studying Viral Syndromes so millions of people can’t get well. These sufferers don’t need YOU the (psychiatrists) they need scientific study in a lab to get to the biologistics of this. You’re doing your covid long hauler patients more harm than good telling them it’s all in their heads, when we’ve known since the Spanish Flu of 1918 that Viruses cause Viral Syndromes in some people…
Experiencing it, I think it is COPD or Stevens Johnson related. COPD should show lower O2 level. Stevens Johnson does not show the lower O2 level by reacts the same way. The brain thinks the O2 level is too low.
I wonder if those patients may benefit from Adipose-derived mesenchymal stromal cells.
It is great that there is a group of scientists researching the Long Haulers but the NIH has avoided funding research for ME/CFS which is a post-viral illness and devastates people’s lives. The NIH has other studies they are funding which have the same symptoms but a different name. It is up to the NIH to fund the research and bring all these symptoms together. ME/CFS already has research centers, several that have been ignored by Dr Collins and the NIH for funding, that have provided most of the answers for this disease. When is the NIH going to get it together and bring together all studies that are studying this decades long illness that has steamrolled their lives. It. Is. Time.
It would be interesting to know if this group of individuals may have reactivated a latent Epstein–Barr virus infection.
I had mono 60 years ago. Could be a common cold reactivated it or my Stevens Johnson. I had a low grade fever for 1 day. Or the cold aggravated my diagnosed Stevens Johnson from taking Lamotrigine for temporal lobe epilepsy reactivated it. But I don’t remember getting an IV for mono. Just rest. The body is complex. Paco could be right most of the time, but if he is wrong once his patient could die from the error.
I am a physician and a COVID long hauler. I tested positive for COVID-19 by nasal swab DNA test and had classic acute COVID symptoms for 2-3 weeks and was hospitalized 4 days. I am now 8 weeks from my initial symptoms/diagnosis and still suffer from fatigue, headaches, brain fog and dizziness. I have not been to work in 8 weeks.
About a week ago my Internal Medicine doctor ordered a large number of lab tests hoping to see why I wasn’t getting better. All were normal except Epstein Barr Virus (EBV):
VIRAL CAPSID AG (VCA) AB (IGM) – 750. Off the chart
EBV NUCLEAR AG (EBNA) AB (IGG) = 361 (High)
Notice all my Ebstein Barr titers are very high, except the IgM. My doctor feels this is a reactivation of EBV caused by COVID. He says he has seen EBV reactivation from other viral illnesses. I have no memory of having Mono, but EBV is ubiquitous.
I believe that long haul COVID may, in many cases such as myself, be a reactivation of EBV. This is an hypothesis that should be tested.
I can also attest that the long haul COVID-19 recovery is a very real clinical syndrome.
EBV often triggers chronic illness ME/cfs and now in addition Covid19 seems to also have long haulers that look perhap similar to ME/cfs in some cases. So you need to learn about ME/cfs and consider pacing to not make yourself worse. Please ask you congressional rep to cosponsor HR 7057 that will fund NIH for post Covid19/ME/cfs R&D, tracking and MD training.
Thanks for sharing your experience, William B. I have been thinking that we’ve gotten to talking a lot about microbiome over the past decade, but we rarely talk about how viruses too might be part of that in our bodies. Are you taking part in the Citizen Scientist (Patient-led) research? I wish you a complete recovery!
I am based in New York and got sick in early March, my symptoms were very much gastrointestinal breathlessness and horrendous headache, it took weeks for me to recover. I’m still not fully recovered having a variety of the usual symptoms coming and going. Anyway, I finally got to the doctors 5 months after infection to find out why I was still feeling so crappy and all my blood work revealed was very high EBV antibodies. It was not an active infection but incredibly high titer, they also felt I had, had a reactivation of EBV very recently. TMI but in addition (and this is true of 3 of my girlfriends who also tested positive) at the end of menstruation we have 3 to 4 days where we are barely able to function, absolute fatigue, unbearable cramps, dizziness where you have to lie very still and emotional upset. Its unbelievable to me that ALL 3 of us now experience this symptom. We are all in our early 40s and had none of this before the illness. Its a very strange illness to be sure and I do agree with your hypothesis regarding EBV.
@Kelly. I commented on William’s post as I too had the high titer for EBV. Not much has been researched on this, but there has to be something there. Curious did you also have elevated liver enzymes and/or mitochondria? I saw that you also had gastrointestinal issues at the start of the illness. Another finding during my blood work up in April (one months after falling ill) was that I tested positive for h-pylori and had it eradicated in May.
Hi Marie
I didn’t have my liver tested but my doctor did say he felt it might be slightly enlarged. I am to return for further testing so I will request this – I have been taking a probiotic which is helping somewhat I have not been tested for hpilori recently but did have a negative test 5 or so years ago. I am interested to know if any long haulers have made any progress in their recovery – I feel like mine is a roller coaster some days I’m 95 percent others I’m 50 it’s very unpredictable and unnerving. I don’t believe there is a current treatment for EBV other than hit or miss antivirals. I wonder if any medical professionals on this thread could advise. I do feel my illness now has a CFS “flavor” to it.
@William B. Thank you for sharing this finding. I too tested with high IGM IGG. Never knew I had EBV and physician said these results mean it was in the past, but if your hypothesis is correct, perhaps we should be treated for EBV? Are there any risks to doing that? I’m currently taking ursodiol as my mitochondria and liver enzymes were also elevated so was given a diagnosis of PBC not Covid since my tests were all negative. My symptoms are many many since March 20th all along the lines of Covid longhauler including glucose intolerance without a high A1C (5.4) No fibrosis either to cause glucose intolerance. It’s has all been unexplainable since March to now. Currently I have heart palpitations when I do not eat in 2-3 hour windows and hair is falling out dramatically, anemia and low iron along with muscle twitching and static energy pulses. Taking B12 and it’s helping, but not with everything.
William, if you see this please reply. I got COVID April 2020 and was a long-hauler. I was treated . . . and have been on meds for 7 weeks. After the first week my long-haul symptoms went away, but my doctor suggested I get a blood test. It showed IgM at 3954 mg/dl and now he thinks I have Multiple Myeloma or Waldenstrom’s Macroglobulinemia. I need to know if there could be a connection between long-haul and very high IgM. This doctor also thinks there is.
Dr. Collins, please recognize the fact that after six months many of these long Covid patients will be eligible for a diagnosis of ME/CFS. NIH’s neglect of ME/CFS over the past 40 years has been devastating. It’s time to dedicate real funding to researching this devastating disease that affects up to 2.5 million Americans. Unfortunately, sadly, tragically, our numbers will surely grow as Covid continues and more and more patients get long Covid that morphs into the permanent ME/CFS.
I think it’s extremely interesting that only 0.6% of long haulers are obese. (See link to the original research).
In the US, this must be highly statistically significant. They also exercise regularly but if they do so after long haul COVID their symptoms worsen.
I’m a long hauler and all these are true for me.
is there any research to see if the “long haulers” have anything in common prior to infection?
Why are citizen scientists having to research COVID-19? I am speaking as someone who has endured ME/CFS for over 35 years and who has three kids who have had ME/CFS. The NIH should be recognizing the impact and prevalence of these diseases and providing commensurate funding and support instead of leaving it to disabled patients, their families, friends, and community. I appreciate what the Open Medicine Foundation, SolveCFS, Patient-led Research for COVID-19,… and other home grown groups are doing but they are filling a gap that the NIH should be covering. Even if NIH went down the wrong path initially with ME/CFS (for decades), they should be correcting course and helping find treatments or a cure for us and for our fellow long-term COVID-19 sufferers.
There is no doubt a relationship between Covid 19 and ACE 2 expressions. My thinking is that post Covid 19, the residual complaints might be the result of activations or a post mutation that accounts for some such as the above Epstein Barr?
The challenges that the scientists and the citizens have taken on might be practical because there are no signs of the pandemic ending or settling down. The information was very helpful. Thank you for sharing the information with us through this article.
You know what was missing in Francis Collin’s nice piece? Any word that the NIH is going to do a darn thing about the long haulers. Right now the NIH looks like its going to do the same thing with the COVID-19 long haulers that it’s done with the REALLY long haulers – people with chronic fatigue syndrome (ME/CFS) who came down with the illness after an infection – and have virtually been ignored by the NIH for decades.
Francis Collins wrote a blog on ME/CFS too…..and look how much good it did. Over 1 million people in the U.S. are getting about $13 million in funding a year. That’s about $13 per patient per year.
Long haulers – don’t believe anything unless you see money on the table. The NIH is very good at imparting concern – not so good at actually getting to work unless you have heart disease, diabetes, HIV, etc.
Why are citizen scientists having to research COVID-19? I am speaking as someone who has endured ME/CFS for over 35 years and who has three kids who have had ME/CFS. The NIH should be recognizing the impact and prevalence of these diseases and providing commensurate funding and support instead of leaving it to disabled patients, their families, friends, and community. I appreciate what the Open Medicine Foundation, SolveCFS, Patient-led Research for COVID-19,… and other home grown groups are doing but they are filling a gap that the NIH should be covering. Even if NIH went down the wrong path initially with ME/CFS (for decades), they should be correcting course and helping find treatments or a cure for us and for our fellow long-term COVID-19 sufferers.
I am Julie O. I have Had covid for, as far as I know, over two months now. Prior to this I have been treated for Thyroid tumors, fibromyalgia and sleep apnea. I waited too long to take the test and therefore got a negative but… diagnoses. My daughter tested positive after the second test. I have tried to deal with this myself,so as not to infect others. It has been really hard to reach my Drs. Their message boxes are full or they don’t get back to me. I have been on this roller coaster with this. I will start to feel better, get up and try to do stuff and I’m down for days again. The most significant symptoms for me have been intense muscle pain, chills, random and extreme, and violent coughing fits. I am taking a medication for the sleep apnea, which tends to lessen the coughing. When it wears off it is really bad … The fatigue issue I had before covid. I have no idea how much longer this will last. I feel like I can’t get treated for my other issues until this is clear. I have no idea when that will be. I’ll go to the Hospital if I feel the symptoms are life threatening, but don’t want to expose myself to other things. When I first got sick with this people kept asking me “are you sure it’s covid?” It was not until my daughter tested positive, that people believed that I had it as well. The people who live with me Knew. I feel like there needs to be guide lines for when to test for this and people you talk to when you have it
My daughter is a long hauler. Late 30s, very fit, eats healthy, exercised often. Has had a number of neurological issues, about 60% are gone but still experiencing: fatigue, flutter feeling in her head, floaters in her eyes and does not to feel “right” enough to go back to her exercise program. Has seen a neurologist and opthamologist, has modified her diet and added supplements, and had vestibular therapy all of which probably helped some issues go away. She initially experienced a physician who implied it was all in her head and offered a prescription for anxiety. These long haulers need the support of the scientific community to research this aspect of COVID-19. Thank you for this valuable article.
… This started for me back in early July. My girlfriend and I believed to both had have Covid so we quarantined and waited until July 16 to go get re-tested. My first test had come back negative in late June. But I was experiencing the loss of smell and taste, low grade fever. My test from July 16 came back positive for Covid, my gf was negative. I’ve since tested negative August 5th. Here are my symptoms that I’ve been dealing with since July 16, appetite pretty much non-existent. Fatigue easily, Nauseous and here is the one symptom that no one can understand, Im cold all the time, whenever I sit for long time or lay down to go to bed, my body gets cold. At first I was like okay, this is part of it, but we are now Sept. 22 and still ongoing. I’ve down blood work twice, Once in mid July and another just last week. Blood work came back good. Dr. wants me to lower cholest (220). and watch get my glucose under 100, (it was at 108). I have also since had a colonoscopy and endoscopy and all came back good. The one symptom that has been consistent since July 16th, is the coldness. My body just getting cold. Starts at my knees, down to my foot up through my arms. During the time I was sick i felt as if someone was poking me inside my body with a needle of some sort, wasnt painful but felt almost like poking me with a cold stick of some sort. Dr. put me on an anti-depressant really hasn’t helped much. Dr.’s look at me like I’m making this up, this is VERY real symptom. If anyone has heard anything like this please reach out to me, I would really appreciate it. God Bless
Similar negative tests and long haul symptoms. But I have other conditions that could be the cause. And CORVID-19 is not the only virus floating around.
But so many symptomatic with negative test results makes me question the accuracy of the tests and if Labs are charging for tests not done and simply reporting them as negative. Are there any audit controls in the test equipment to prevent this?