A sizeable proportion of people who recover from COVID-19 may then go on to experience some lingering symptoms. The most common of these are shortness of breath, cognitive dysfunction, and fatigue, all of which may last for months.
But there are also numerous other symptoms including anxiety, depression, muscle aches, and loss of smell and taste. These symptoms are aggregated as post-acute sequelae of SARS-CoV-2 infection (PASC) – or more commonly known as long COVID.
As the months elapse after a COVID-19 infection, uncertainty inevitably exists over the causal connection with any subsequent health deterioration. Diligent longitudinal studies over a number of years will be required to clarify the risks of long COVID within a population.
But recent surveys and studies outline the potential scale of the issue. In the U.K., monthly national self-reporting surveys from the Office for National Statistics (ONS) allow for regular updates on long COVID prevalence, providing an observational window into the evolving long COVID risk.
As of June 2022, an estimated two million people living in private households in the U.K. (3 percent of the population) self-reported experiencing long COVID symptoms persisting for more than four weeks after the first suspected infection.
This is less than 10 percent of the overall 23 million COVID-19 cases reported in the U.K.; however, the two million estimate does not include those living in care homes.
In an international meta-analysis of long COVID prevalence, much higher prevalence rates were found, in accord with a community study of more than 600,000 people in England. Furthermore, a CDC study has suggested that as high a proportion as one-third of those positively tested might have long COVID.
With more than 88 million reported COVID-19 cases in the U.S., long COVID casts a growing health shadow over many millions of Americans, and all over the world.
Long COVID and Social Media
With the millions of people afflicted by long COVID, there is an opportunity for citizen scientists to contribute to mass data gathering and advance the cause of personalized medicine, to take individual variability into account.
Early in the pandemic, patients started sharing their experiences on Twitter, drawing attention to possible COVID-related sequelae. (Sequelae is defined as conditions resulting from a disease, injury, therapy, or other trauma.) But to make a major societal difference, a more organized data-gathering approach was needed.
Serendipity has always expedited medical advancement; developments addressing one medical issue have fortuitously turned out to be beneficial elsewhere. On March 9, 2020, Diane Berrent, a 45-year-old New Yorker and former lawyer, was infected with COVID-19. On recovery after spending 18 days in isolation, she was eager to help others recover by donating convalescent plasma.
In order to encourage others to follow her example and donate, on March 24, 2020, Berrent set up a Facebook group, and later a website, that she named Survivor Corps. Within a few weeks, she found that many members were not recovering. As the pandemic continued, it became clear that Survivor Corps members were struggling with symptoms for weeks and months.
Long COVID is the first patient-identified illness rooted in a social media network. With more than 200,000 members, Survivor Corps – a nonprofit devoted to encouraging government agencies and private health systems to develop treatment for long COVID – is a vital aggregate source of information about long COVID.
Directed by a good, empathetic communicator with a legal background, Berrent as a long COVID survivor looks to lobby forcefully for change in public policy on the management of the disease, including issues such as financial support and health insurance.
The voluntary collective public sharing of personal health information about newly emergent illnesses can generate new data and fresh insights for the medical research community. If a patient presents with some unfamiliar long COVID symptom, this is confidential information not to be shared outside a doctor’s surgery.
Yet Survivor Corps members have self-reported extreme neuropathic pain, Parkinsonian tremors, COVID-onset diabetes and lupus, adrenal fatigue, hearing and vision loss, as well as dental problems due to vascular jaw damage.
Berrent has disclosed that many members have lives so blighted by long COVID that they have ended them and has warned of a tsunami of long COVID suicides. Other than through Survivor Corps, there has not been an effective method of gauging the number of suicides due to the intolerable burden of long COVID. For example, if a young athlete took his or her own life due to long COVID, it would be registered as a suicide.
But as of October 2021, a new post-COVID classification code from the International Classification of Diseases (ICD) has been introduced as a critical step to improve patient care, as well as for tracking and research purposes. It is already known that older patients aged 65 or more with severe COVID have an increased 12-month mortality risk.
As with all social media content, the reliability and authenticity of information contributed by some Survivor Corps members may be open to query. But as an influential patient-advocacy group, Survivor Corps serves a practical societal function in galvanizing and expanding scientific research on long COVID.
Having scrutinized the long COVID information from Survivor Corps members, Berrent reckons that we will look back on it largely as a neurological disease. There is a growing body of scientific evidence to support this.
COVID-19 and Neurological Issues
Even mild cases of COVID-19 may lead to a loss of cognitive function and a reduction in brain volume equivalent to at least one year of normal aging. This is a recent finding from brain scans taken both before and, on average, four and a half months after coronavirus infection. A key open question is whether this brain tissue damage resolves in the longer term.
Individuals who have recovered from COVID-19 perform worse on a range of cognitive tests than would be expected given their age and demographic profiles. For those who had ventilator treatment, the score reduction has been worse than the average 10-year decline. Severe COVID-19 illness is associated with significant objectively measurable cognitive deficits that persist into the chronic phase.
A high rate of failed neuropsychological tests among the elderly has further shown that COVID-19 can elicit persistent, measurable neurocognitive alterations, particularly in the areas of attention and working memory. These effects, which degrade basic social and living skills, may represent an early stage of cognitive impairment in the elderly and give rise to concern about an increased prevalence of dementia among the elderly.
A further concern in the future is the prospect of increased dementia among middle-aged people afflicted with long COVID in their thirties and forties. This would impact sickness and disability insurance coverages, among other economic and social disruptions.
Dr. Serena Spudich, professor of neurology at Yale School of Medicine and division chief of neurological infections and global neurology, based at the Yale New Haven Hospital neuroCOVID clinic, considers the most likely cause of the cognitive dysfunction known as brain fog to be inflammation created by the immune response.
Neurological complications are often among the first symptoms of SARS-CoV-2 infection and can be the most severe and persistent. They can also affect people of all ages and with varying degrees of disease severity.
In order to improve understanding of neuropathogenesis, a study of brain pathology has recently been undertaken in nonhuman primates. The development of animal models is critical for rapidly progressing this understanding.
Neuroinflammation has been found in nonhuman primates with SARS-CoV-2 infection. A pathological investigation found severe brain inflammation and injury consistent with reduced blood flow or oxygen to the brain, including neuron damage and death.
This research provides important insight into the mechanisms underlying central nervous system disease, observed even in the absence of severe respiratory disease. It may suggest that hypoxic brain injury, when the brain does not get enough oxygen, is a common complication of COVID-19.
Neuronal degeneration may indicate that nonreversible neuronal injury could be significant for those suffering from long COVID. This would suggest the need for long-term neurological follow-up of persistently symptomatic convalescent patients, and it underlines the importance of establishing benchmarks for long COVID prevalence.
Observations of neuroinflammation and neuronal injury in acute COVID-19 cases may accelerate or trigger the future development of neurodegenerative diseases such as Alzheimer’s disease.
As COVID-19 becomes endemic, new public health protocols should be established for long COVID. For the working population, sickness and disability insurance products may need to be developed to provide financial support for those whose lives have been upended by long COVID.
This is a potentially valuable societal contribution from the insurance industry to mitigate the need for policy and functional outcomes for addressing long COVID, such as a long COVID suicide helpline, which has been advocated by Berrent.
Read Gordon Woo’s bulletin on long COVID at the COVID-19 Actuaries Response Group website. Find out more about RMS® LifeRisks® cloud-based software platform for the management of extreme mortality and longevity risk.