(CNN)There’s no test for long Covid. There’s no specific drug to take or exercises to do to ease its symptoms. There isn’t a consensus on what long Covid symptoms are, and some doctors even doubt that it’s real. Yet with vast numbers of people having had Covid-19, and estimates ranging from 7.7 million to 23 million long Covid patients in the US alone, researchers say it has the potential to be “the next public health disaster in the making.”
The Biden administration released two reports this week to initiate a whole-government effort to prevent, detect and treat long Covid. Two new studies also try to gather some of the small pieces of the puzzle that is long Covid.
The Biden long Covid agenda
President Joe Biden said in April that long Covid was a priority for his administration and ordered two reports: one that lays out a research agenda for the country and one that sketches out the federally funded services and support available for people in the US with long Covid. A total of 14 government departments and agencies worked together to create these new long Covid plans.
“A national, US government-wide coordinated, action-oriented approach is urgently needed,” the report says.
The plan proposes a new long Covid office within the Department of Health and Human Services, but it does not offer specifics on how to fund or staff the office.
The plan also calls for further federal investment and asks the private sector to do more. It builds on existing government research with a goal to accelerate and expand it.
“These initial reports are an important step as HHS continues to accelerate research and programmatic support to address the consequences of the pandemic and work across sectors to ensure no one is left behind as we continue to build a healthier future,” HHS says.
Higher risks of serious problems for children
As of last week, more than 14 million children in the US have tested positive for Covid-19, according to the American Academy of Pediatrics. But it’s unclear how many have had long Covid.
One study published in July estimated that fewer kids have it than adults: 5% to 10% of children who have had Covid. Other researchers believe the number is much higher: around 26% of kids who have had Covid.
Children typically have some of the same symptoms of long Covid as adults do — including breathing problems, changes in taste and smell, brain fog, anxiety, depression, fatigue and sleep disorders — but they can also have serious problems that involve their organs.
A new report from the US Centers for Disease Control and Prevention says kids with long Covid have a much higher chance of serious lung, heart, kidney and pancreatic problems than kids who did not catch the virus.
For the sake of their study, the CDC researchers define long Covid as involving symptoms four or more weeks after a Covid-19 diagnosis.
They used a large medical claims database to look for 15 long Covid conditions among 781,419 children and adolescents who had a confirmed case of Covid-19.
The study, published Thursday, found that children with long Covid had higher rates of an acute pulmonary embolism or a blockage in the lung that can cause a sudden shortness of breath, anxiety, chest pain, palpitations and dizziness.
They also had a higher rate of potentially serious heart conditions like myocarditis, inflammation of the heart muscle that can cause a rapid or irregular heartbeat, chest pain, shortness of breath, fatigue and body aches. They had a higher rate of cardiomyopathy, a condition that makes it difficult for the heart muscle to deliver blood to the body and, in extreme cases, can lead to heart failure.
Children with long Covid also had a higher chance of kidney failure and were more likely to develop type 1 diabetes.
All of these conditions are rare or uncommon in this age group, the CDC says.
Early in the pandemic, people believed that Covid-19 wasn’t as serious for children. Unlike with other respiratory viruses, children often have less severe symptoms than adults do, some studies show, but that is not always the case.
Dr. Amy Edwards, associate medical director of pediatric infection control at UH Rainbow Babies and Children’s Hospital in Cleveland, said she has seen children with more severe symptoms like myocarditis and cardiomyopathy, as well as some problems with blood clotting.
“It’s nice to see proof here that children experience long Covid symptoms,” said Edwards, who was not involved in the study.
Edwards would have liked the researchers to distinguish between long Covid and MIS-C, a rare but serious condition that can also follow a case of Covid-19 and causes similar symptoms in the same window of time. But any study that raises awareness about long Covid can help, she said.
Several patients have come to her after other doctors dismissed the seriousness of their symptoms, she said. And she worries about the kids whose caregivers don’t know to get their children the extra help from a doctor or Covid clinic that they may need to get better.
“Those are the kids that keep me up at night. I worry about those kids,” Edwards said.
The CDC researchers say they hope their study will encourage caregivers to get children vaccinated and to watch for these serious symptoms and conditions among kids who get Covid-19.
“Covid-19 prevention strategies, including vaccination for all eligible children and adolescents, are critical to prevent SARS-CoV-2 infection and subsequent illness, including post-Covid symptoms and conditions,” the study said.
12.7% of infections may lead to long Covid
Another new long Covid study finds that 1 in 8 adults with Covid-19 may have symptoms months beyond the initial infection.
The study, published Thursday in the journal The Lancet, found that 12.7% of people with Covid-19 had new or severely increased symptoms at least three months after their initial diagnosis, a smaller percentage than some other research has suggested.
The researchers surveyed 4,231 people who had Covid and 8,462 who didn’t. They checked in on the participants 24 times between March 2020 and August 2021 and compared the two groups.
The researchers asked about 23 symptoms, and fatigue and shortness of breath were most common. Many people also reported chest pain.
The study’s limitations include that it was done in the Netherlands and does not include an ethnically diverse population. Most of the data was collected before vaccines were available, and some studies suggest that vaccination can help protect against long Covid.
The research was also conducted before the dominance of the Omicron coronavirus variant, so it’s unclear whether the results would be the same in people infected with later strains.
The researchers say scientists must do more to determine what long Covid is and how many people get it, as well as how to treat or even prevent it.
“Research has been hampered by an absence of a consensus on the prevalence and nature of the post-Covid-19 condition,” the study says.
“There is an urgent need for empirical data informing on the scale and scope of the problem to support the development of an adequate health-care response.”