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)
These people are suffering from anxiety and depression – not COVID-19.
They’re not mutually exclusive.
It’s an AUTOIMMUNE process obviously triggered by COVID-19 and unless you’ve ever personally experienced years of autoimmune diseases attacking your own body, Donald please.
I have long Covid and can’t breathe. Are you telling me that’s depression? Stay in your lane, please.
Most people who took herbal supplements, all their symptoms are gone with 3-6 days. And the cost of the herbal supplements are minimal compare to other type of medical remedies. COVID-19 could be treated like a cold or flu. Nothing to be afraid of. It’s time to contact us and measure the validity for the sake of dying and suffering people.
Your comment must be supported with science, not just an opinion. Others may actually believe your unproven statements, which could cause them their lives.
I agree Robert. These are dangerous and unproven statements.
I hope you might edit this blog post to publicly recognize the likely correlation and clear similarities between ME/CFS and Long Covid, as NIH’s Avi Nath and Anthony Fauci have already done. It’s baffling and unfathomable why NIH has chosen to neglect ME/CFS for decades
Learn from ME/CFS, don’t ignore it.
You can’t quote Dr. King one day & then lead in a way that runs counter to his words & teachings the other 364.
Your silence on ME/CFS in this article is as clear as your indifference towards us. You dismiss us. How can you not even mention the overlap with Long-Covid? How?@NIH
It is hard to understand how, with any good intention, you can discuss the sequelae of COVID-19 without correlating this to ME/CFS (myalgic encephalomyelitis). https://doi.org/10.3389/fmed.2020.606824
Your refusal to connect this with ME/cfs is astounding. This helps no one: not LongCovid patients, nor ME/cfs patients (and Lyme), or victims of future epidemics. When will you learn? You neglected ME/cfs, but why don’t you admit you messed up and acknowledge the need to do better?
I wish A Jensen would have been in charge during the pandemic, because under his charge, we’d all likely be dead by now (except for maybe cockroaches).
Yes hello everyone I’am a Social Worker was exposed 02 /08/2020..5 months later ba k in the hospital.O have not been able to work due yo asthma,sob at rest,keep tripping have also fell.unable to concentrate.
All right, all right, This piece is magnificent and perfect. There’s been a lot of experience gained. I enjoyed it immensely. That kind of text may be it.
The similarities between symptoms of Long COVID and ME/CFS must be acknowledged. In addition, recipients of the mRNA vaccines must be encouraged to enroll in CDC’s survey app (V-Safe) to get data on Long COVID symptoms that occur after vaccination under EUA. This is possible because, like natural SARS-CoV-2 infection, the mRNA vaccines put Spike protein in the outside of the cell membrane, which can provoke an autoimmune reaction. Other vaccines, like antigen or killed virus vaccines, may not be as risky. Only the V-Safe project will provide the data.
Post-viral illness with symptoms, such as fatigue, malaise following activity, cognitive impairment and unrestful sleep is well known from other viruses, e.g. Sars-Cov1, EBV, HH6, MERS and CMV. Please refer to CDC , Institute of Medicine , NICE  or the European Guidelines  for diagnostic criteria and current knowledge of therapies for what has been defined as Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) by the WHO.
At the NIH Long COVID-19 meeting, Dr. Anthony Fauci noted the association between LongCOVID and ME/CFS. It would be beneficial for this relationship to be called to the attention of researchers and practitioners alike. As Rivka suggests above, a revision of this blog to incorporate this is warranted. Knowledge regarding post-viral infection neuroimmune dysfunction is growing and this is not a function of anxiety and depression. Currently, a number of studies researching the impact of both(ME and LongCOVID) along with Lyme are being implemented. These studies hold promise for gaining a greater understanding of the long-term impact of viral infection on patients will lead to more effective treatment.
It would be a comfort to the people that develop ME/cfs from Covid to know research has started for their newly acquired illness and researchers do not have to start from scratch. Spinning off a new name for a disease that is already established will take longer for them to receive help. I too ask that you edit this blog to include ME/cfs. I
I completed the survey but was unable to print or save a copy of my response, as it may help my Dr’s better understand the overall picture. Please advise if a copy can be emailed to me or a link on how I can access my responses.
Thank you for the important work you are doing!
Melody, the survey that you took is being conducted by Patient-led Research for COVID-19. For more information, we suggest that you contact: firstname.lastname@example.org
“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.” How are we not connecting this to ME/CFS?
From this NIH site:
“One of the major symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is post-exertional malaise (PEM), the worsening of symptoms after physical or mental activities.
“Post-exertional malaise following normal activities is unique to ME/CFS and we do not understand the biology underlying this severe and harmful feature of the disease,” said Walter Koroshetz, M.D., director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS).”
Umm, if post-exertional malaise is UNIQUE to ME/CFS, and people with long-covid are experiencing post-exertional malaise… Hmm, I think because of logic, that implies that many people with ‘long-covid’ have ME/CFS. Why is this being ignored?
Many share the hope that you will gain much more insight and get some answers soon. Please expand your study of the prolonged health consequences by including ME/CFS patients.
Why is this not being connected to ME/CFS? Worsening of symptoms after activity, aka post-exertional malaise… the NIH had said that is unique to ME/CFS, but now it is a common symptom of long-covid. Why on earth are these not being connected? It seems harmful to everyone in both communities dealing with these awful illnesses.
Please edit this blog to include discussion of ME/CFS or dedicate a stand-alone blog article to ME/CFS and Long COVID. Experts at Harvard Med School and elsewhere conservatively estimate that 10% of all COVID-19 patients will develop ME/CFS. We are already seeing this both in terms of doctors diagnosing Long COVID patients with ME/CFS and with the Long COVID symptoms you cite in this blog. For example, 4 of the 5 symptoms you list as being among the most common in Long COVID comprise the Institute of Medicine’s 2015 diagnostic criteria for ME/CFS: 1) Fatigue, 2) Worsening of symptoms after physical/mental activity (Post-exertional Malaise), 3) Trouble sleeping, and 4) Brain fog/ difficulty thinking clearly. If current trends hold, in 2021, millions of Americans will get ME/CFS from COVID-19, doubling the point prevalence, and become disabled for life. It is incumbent upon you to address this on a large scale through emergency research and education, such as this blog.
I hope your blog will acknowledge that many of the COVID “long-haulers” who have been ill for 6 months now meet diagnostic criteria for ME/CFS.
Your own Dr. Fauci has said the symptoms experienced by Long Covid patients resemble those seen in patients with Myalgic Encephalomyelitis. There have been numerous articles from around the world addressing this. Why are you not even mentioning it? Long Covid patients and their doctors need to know.
I’m a 10-month long COVID patient and I’m frightened that this article doesn’t mention ME/CFS. Many if not most long COVID patients have symptoms that are largely indistinguishable from ME/CFS. Failing to acknowledge this link will lead to misdirected long COVID research and a failure to leverage the work that had already been done on ME/CFS. Dr. Collins’ failure to see the links to ME/CFS does not bode well for me and my fellow long COVID patients, who are desperate for NIH to quickly understand and find treatments for our condition.