Trying to Make Sense of Long COVID Syndrome
Posted on by Dr. Francis Collins
More than 400,000 Americans have now lost their lives to COVID-19. But thousands of others who’ve gotten sick and survived COVID-19 are finding that a full recovery can be surprisingly elusive. Weeks and months after seemingly recovering from even mild cases of COVID-19, many battle a wide range of health problems.
Indeed, new results from the largest global study of this emerging “Long COVID syndrome” highlight just how real and pressing this public health concern really is. The study, reported recently as a pre-print on medRxiv, is based on survey results from more than 3,700 self-described COVID “Long Haulers” in 56 countries . They show nearly half couldn’t work full time six months after unexpectedly developing prolonged symptoms of COVID-19. A small percentage of respondents, thankfully, seemed to have bounced back from brief bouts of Long COVID, though time will tell whether they have fully recovered.
These findings are the second installment from the online Body Politic COVID-19 Support Group and its Patient-Led Research for COVID-19, which consists of citizen scientists with a wide range of expertise in the arts and sciences who are struggling with the prolonged effects of COVID-19 themselves. In an earlier survey, this group provided a first-draft description of Long COVID syndrome, based on the self-reported experiences of 640 respondents.
In the new survey-based study led by Athena Akrami, with Patient-Led Research for COVID-19 and University College London, England, the goal was to characterize the experiences of many more people with Long COVID syndrome. They now define the syndrome as a collection of symptoms lasting for more than 28 days.
This second survey emphasizes the course and severity of more than 200 symptoms over time, including those affecting the heart, lungs, gastrointestinal system, muscles, and joints. It took a particularly in-depth look at neurological and neuropsychiatric symptoms, along with the ability of COVID-19 survivors to return to work and participate in other aspects of everyday life.
The 3,762 individuals who responded to the survey were predominately white females, between the ages of 30 and 60, who lived in the United States. As in the previous survey, the study included adults with symptoms consistent with COVID-19, whether or not the infection had been confirmed by a viral or antibody test. That is a potential weakness of the study, as some of these individuals may have had some other inciting illness. But many of the study’s participants developed symptoms early on in the pandemic, when testing was much more limited than it is now.
More than half never sought hospital care. Only 8 percent said that they’d been admitted to the hospital for COVID-19. And yet, 2,464 respondents reported COVID-19 symptoms lasting six months or longer. Most of the remaining respondents also continued to have symptoms, although they had not yet reached the six-month mark.
Among the most common symptoms were fatigue, worsening of symptoms after physical or mental activity, shortness of breath, trouble sleeping, and “brain fog,” or difficulty thinking clearly. The majority—88 percent—said they coped with some form of cognitive dysfunction or memory loss that to varying degrees affected their everyday lives. That includes the ability to make decisions, have conversations, follow instructions, and drive.
Those who had prolonged symptoms of COVID-19 for more than six months reported contending with about 14 symptoms on average. Most also reported that they’d had a relapse of symptoms, seemingly triggered by exercise, mental activity, or just everyday stress. When surveyed, nearly half of respondents said they’d had to reduce their hours at work due to the severity of their symptoms. Another 22 percent weren’t working at all due to their Long COVID.
The findings show that—even in those people who don’t require hospitalization for severe COVID-19—the condition’s prolonged symptoms are having a major impact on lives and livelihoods, both here and around the world. While the number of people affected isn’t yet known, if even a small proportion of the vast numbers of people infected with COVID-19 develop Long COVID syndrome, it represents a significant public health concern.
Another recent study from China further documents the tendency of COVID-19-related symptoms to linger past the usual recovery time for a respiratory virus . The study, published in Lancet, showed that six months after the onset of illness, more than 75 percent of people hospitalized with COVID-19 in Wuhan between January and May 2020 continued to report at least one symptom. Fatigue, muscle weakness, sleep difficulties, anxiety, and depression all were common. More than half of individuals also had significant persistent lung abnormalities, which were more common in those who’d been more severely ill.
It’s essential for us to learn all we can about how SARS-CoV-2, which is the coronavirus that causes COVID-19, leads to such widespread symptoms. It’s also essential that we develop ways to better treat or prevent these symptoms. The NIH held a workshop last month to summarize what is known and fill in key gaps in our knowledge about Long COVID syndrome, which is clinically known as post-acute sequelae of COVID-19 (PASC). In December, Congress authorized funding for continued research on PASC, including an appropriation of funds for NIH to support continued study of these prolonged health consequences.
As these efforts and others proceed in the coming months, the hope is that we’ll gain much more insight and get some answers soon. And, if you’ve had or are currently experiencing symptoms of COVID-19, there’s still time to share your data by participating in the Patient-Led Research for COVID-19’s second survey.
 Characterizing Long COVID in an international cohort: 7 months of symptoms and their impact. David HE et al. Medrxiv. 27 December 27 2020.
 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. Huang C, Huang L, et al. Lancet. 2021 Jan 16;397(10270):220-232.
COVID-19 Research (NIH)
Akrami Lab (Sainsbury Wellcome Center, University College London, England)
Patient-led Research for COVID-19
Video: Workshop on Post-Acute Sequelae of COVID-19 (NIH)
Have a look at ME/CFS. Same symptoms and the onset is in 80% of the cases post viral (mononucleosis a.o.). If treated as a mental disorder these patients become severely ill and some die. The scientific evidence is overwhelming. Have a look at the similarities of long-COVID and ME/CFS. It’ll save time, money and most of all a lot of suffering.
Why aren’t you looking at the M.E, connection instead of ignoring it?That might be more helpful to the long haulers.
There needs to be a discussion about the connection between Long Covid and ME/CFS. Research into long COVID is an opportunity to help the ME/CFS community as well, and I feel certain that the longer the NIH is silent on this matter the more apparent it is that they will end up on the wrong side of history, when ME/CFS etiology and treatment is elucidated.
I can’t believe that you do not make a reference to ME !!!! Almost corresponding word for word to other texts related to ME. As a long ”hauler” of ME, I recognize almost each symptom you talk about. And I have compassion for these people but in the same time, I wonder if they will receive more attention than ME sufferers since we have been sent to pyschiatrists for years, up to the Doctor Moreau recent research….
Stop ignoring us with ME!!
I don’t wish to come across as arrogant, but I cannot help but feel such disappointment at the complete failure to acknowledge the now emerging similarity between LC and ME. Yes they might have different initiating factors, LC being new and all, but the principle of infection rendering millions across the world in a poor ongoing quality of life they didn’t choose is almost unbelievable. I’ve not been able to have children, climb mountains or work my chosen career because of ME. Sometimes I struggle to sit up alone. This is our ongoing reality. Similar to that of LC patients. I ask on behalf of LC & ME patients that you at least consider helping us all. We’re only human. We only want to to do the best in life. That’s all anybody wants. You have the power to make such a difference to millions of lives globally. Please use that power 🙏
Ever hear of MEcfs? It’s the disease you have hidden in the attic.
Got as far as the neurological questions, but the survey would not allow me to go past this question. It kept asking me to answer even though I had. I pressed the back button, and it kicked me out.
Alison, the survey that you tried to take is being conducted by Patient-led Research for COVID-19. For more information, we suggest that you contact: firstname.lastname@example.org
It’s AUTOIMMUNE disease that has effected everyone. As I am the typical middle-aged white woman with plenty of autoimmune disease in my body this is what happens! I’m so sorry You just learn to live with it, Until Someday hopefully they find a stop to our overactive immune system trying to kill our own bodies.
I have auto immune too just trying to deal with fatigue muscle joint pain and stomach issues it has been about 4 months
I was in intensive care for 6 days
Why do you not mention ME/CFS? Comes from Virus and Bacterial infection. Ignored by you and the medical establishment since ages! Leaving patients in the most miserable life that one can imagine. And the only “cure” they get is a psychological one, making their disease much worse and some even die because of graded exercise they are forced to do! Pure torture! But still ignored by you even now!!! Listen, truth always finds its way, just a matter of time!
Anyone with long Lyme and confections Borrelia syndrome will recognize that some things linger. Until the MR/CFS is linked to a pathogenic infection it will continue to plague the world.
We need to address the similarities and connections between ME/CFS and Long COVID.
I was pleased to see that your linked Reference  notes a strong correlation between Long-Covid and ME/CFS presentation. While that was not mentioned in the blog itself, I am very hopeful that your Covid-based research will also provide answers for those whose “long” disease resulted from other viruses. Thank you for this effort.
Has there been any informal research to see if long haulers that continue to have symptoms receiving the vaccine help with reducing symptoms? It seems that there may be some small undetectable amount of virus still replicating in long haulers so there may be value in moving long haulers to the top of list for vaccinations.
That is what I experienced. Shortly after the first vaccination with Moderna, the brain fog was gone. I had the first shot on 2/10, will have the second on March 10. It’s March 1 now, the brain fog did not return.
This happened to me in 2013. I was a high energy person until I caught a flu I had no immune response for. Everything long haulers experience I too experienced then and to a large degree still do. The only difference is Drs found a 4mm focal point deep in my brain. 18 month after illness a sleep study shows I began skipping stage three sleep and another year after that I was diagnosed with narcolepsy. I had never received a vaccination for anything other than the childhood inoculations. My doctor tried to get me into the Mayo Clinic and other research hospitals, but they all turned me down. Finally Kansas University Hospital accepted me. The flu I caught in 2013 changed me forever. I never returned to any form of a normal life. I hope NIH can help. COVID isn’t the only flu strain that can do this to people.
I had the same response after having Mono in my 40’s – months of extreme fatigue, heart issues, brain fog, muscle weakness. Went to many doctors who couldn’t figure it out. Went to one who was also a naturopath – he found I had low Vit D levels and a long history of taking antibiotics, so recommended a good probiotic. I also looked at stress in my life and a poor sleep pattern. Made necessary changes and was well in a few months as my body dealt with the “retro virus” that the mono virus had triggered. I had no idea I had that in my system as I was always healthy and active. Please check this as part of your study – it made a HUGE difference for me and I’ve stayed healthy ever since.
Hello PEOPLE I’m not a doctor but I know it’s an obvious AUTOIMMUNE response These poor people are experiencing what I’ve suffered personally for years, you can never put a finger on it, you’ll never know what’s next, your body will attack whatever your immune system wants when it wants. I hope someday we can stop the Cytokine storm in these Covid long hauler sufferers immune system.
I am 72 years old. I have pollen allergies, etc. All 3 of my children have allergies, one needed those anti-allergy shots when he was in grade school. One has alopecia. He started loosing his hair in grade school and has no hair, anywhere, even in his nose. I was constantly tired. Needed naps. Recently I would try to read a book and would fall asleep -in early afternoon – over and over. Then I got my 2 Pfizers. My tiredness diminished after the first & STOPPED after the 2nd one two weeks ago. I have no idea what is going on, but I love it!
I had mild Covid in December 2020 and recovered fine until about a month later when I started having breathing difficulties with basic things like walking up stairs. It got like I ran a marathon. I was put on asthma medicine and steroids by PCP but nothing helped. I had a chest X-ray by the PCP and a Pulmonologist, still no answers. Now I also have sharp pain in the right side of my chest, which now I’m being told is probably Pleurisy. I was a healthy 40 year old before Covid, and now I have breathing problems, chest pain, and anxiety attacks.
Any others with similar issues after Covid?
Elizabeth, The flu I caught in 2013 acted similar. I had a flu, seemed to be recovering, relapsed and told it was reactivated EBV. Rested and relapsed three weeks later. I’m out of breath walking to my kitchen. It has never gone away. The fatigue has left me nearly home bound. I leave the house maybe once a week. I had so many test run on my heart, lungs, brain, spine it takes a 3” binder to hold copies of all test and images. I took it to every appointment because it was too difficult getting records sent to the next specialist I was referred to. All told, I would see 20 specialists over 3 years. And to think it all started with a flu.
I developed flu symptoms March 11 2020, was not tested just signed off work in case it was covid. I recovered after about 2.5 weeks. It was a a fairly mild case with a lingering cough. However, like you, it was about 4 weeks after recovering that I began to develop severe fatigue and brain fog shortly followed by an avalanche of other symptoms, PEM, POTS, terrible headaches, eye pain, sore throat, myalgia, feeling of bonfire smoke in lungs, breathing and sleep difficulties, etc. I became housebound June 3rd, and I am still housebound due to severe PEM. I asked on a long covid support group if others had experienced this delay between recovery and the start of new symptoms and it seems to be common. I also had the pleurisy type pains but only during the acute phase towards the end of my recovery, but it didn’t last too long. I am really curious about this delayed aspect!
I had my 2 nd covid-19 shot (pfizer) April 1st, I’m 58 yrs old the last 2 days I’ve had some trouble once in a while I’ll say a word and I know what I’m saying but the word is mixed up. I’m going to get some allergy medine make sure that’s not the problem. I will send another comment if that doesn’t help because its not something I’ve experienced before, please let me know that im doing the right thing for now.
In general I treat both ME/CFS and LC the same way, and the results are near identical.