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A new long-term covid study based on the experiences of almost 100,000 participants provides powerful evidence that many people do not fully recover months after being infected with the coronavirus.
The Scottish study found that between six and 18 months after infection, 1 in 20 people had not recovered and 42 percent reported a partial recovery. There were some reassuring aspects of the results: people with asymptomatic infections are unlikely to suffer long-term effects, and vaccination appears to offer some protection against long-term covid.
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“It’s a more well-done population-level study that shows we should be very concerned about the current number of acute infections,” said David Putrino, director of rehabilitation innovation at Mount Sinai Health System in New York. “We’re in trouble.”
Jill Pell, a professor of public health at the University of Glasgow who led the research, emphasized that the study revealed the wide impact of the long covid on people’s lives. “There are many different impacts that go beyond health to quality of life, employment, schooling and the ability to care for oneself,” he said.
For these three long haulers, debilitating symptoms and fatigue have kept them from returning to work, and instead they struggle to navigate their new normal. (Video: Drea Cornejo, Joy Yi, Colin Archdeacon/The Washington Post, Photo: Carolyn Van Houten/The Washington Post)
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The paper, published Wednesday in Nature Communications, represents the first findings of an ongoing long-covid study: the Long-CISS (Covid in Scotland Study).
The range of reported symptoms and the inability to provide a prognosis for patients has long puzzled covid researchers, even as the scope of the challenge has become clearer. According to government estimates, between 7 and 23 million Americans, including 1 million who are no longer able to work, suffer from the long-term effects of the virus infection. These numbers are expected to increase as covid becomes an endemic disease.
Previous studies have been challenged by the non-specific nature of long-term covid symptoms, such as shortness of breath and fatigue, which are also common in the general population. Pell said the Covid in Scotland study, which included a control group, was able to identify which symptoms were linked to covid.
“Those with covid were significantly more likely to suffer from 24 of the 26 symptoms studied compared to the general population never infected,” he said. For example, those who were infected were three and a half times more likely to not be breathing.
He went to one doctor, then another and another
Putrino noted that 16 to 31 percent of the control group also experienced these same symptoms, a number that is similar to the false-negative rate of a PCR test, suggesting that some in the control group may have been infected Pell agreed that it’s possible that some people with negative tests could have been infected, which serves to bolster the study’s broader findings.
Symptoms of long carriers vary widely from person to person. In the Scottish study, the most common symptoms included shortness of breath, palpitations, chest pain and “brain fog”, or reduced mental acuity.
Symptoms were worse among people who were sick enough to be hospitalized during the acute infection, a fact that does nothing to quell experts’ concerns.
“It’s always been the case that those who are sickest are more likely to have long-term sequelae,” Putrino said. “The scary thing is that mild cases far outnumber severe cases, so even a small percentage of mild cases developing long-term sequelae is a massive public health problem.”
Putrino also cautioned against assuming that asymptomatic infection is not associated with persistent symptoms.
“We have seen many patients who had a confirmed asymptomatic case,” he said. “It does happen. It’s statistically less common than those with symptomatic infection.”
The study found that the risk of long covid was higher among women, the elderly and those living in economically disadvantaged communities. People who already suffered from physical and mental health problems, such as respiratory illness and depression, were also more likely to have a long covid.
“Crucially, this study also identified a subcohort of 11 percent who deteriorated over time. This is something that is often seen in patient groups, but has not been discussed enough in the conversation public,” said Hannah Davis, a member of the Patient-Led Research Collaborative, a group of patients who have been involved in long-term covid research.
While the study didn’t reveal any particular surprises, its nationwide design provides new rigor, Pell said. More than 33,000 people with laboratory-confirmed infections participated, along with 62,957 people who had never been infected.
During the pandemic, US experts, including the president’s chief medical adviser Anthony S. Fauci, regularly turned to British data to it comes from the nationalized healthcare system and reflects trends across the population.
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Using National Health Service records, the researchers sent a text message to all Scottish adults who had a positive PCR test, as well as a group of people who tested negative for covid, to invite them to take part. Those who chose to enroll answered online survey questions about their health before and after infection.
“Being able to access survey data from this large cohort is very powerful,” said James Harker, an immunologist at Imperial College London who studies the long-term impact of the coronavirus on the lungs. American studies have had to rely on smaller numbers or use multiple studies to create meta-analyses, which have inherent flaws, Harker said.
Among the issues that deserve further exploration is the degree of protection afforded by vaccination, according to Putrino. Recent studies show that vaccination reduces the chance of developing long covid, but not as much as previously thought.
“That’s one of the most important things we need to understand next,” Putrino said.
The University of Glasgow team led by Pell worked with Public Health Scotland, the Scottish National Health Service and the Universities of Aberdeen and Edinburgh, and was funded by the Scottish Government’s Chief Scientist Office and Public Health Scotland.
The investigators plan further studies, according to Pell. The current study followed up with people at six, 12 and 18 months after infection. Among those who had confirmed covid, 13 percent reported some improvement.
“We’re trying to look more closely at these changes in symptoms over time and what factors are associated with them,” Pell said.