Massive Study of Long COVID Launched

The National Institutes of Health yesterday unveiled a $470 million study that it hopes will mine data from 30,000–40,000 people who suffer from long COVID. Right now, there are more questions than answers.

Medical experts intend to take a closer look at long COVID, one of the more troublesome known unknowns of the pandemic. People who suffer from long COVID exhibit acute symptoms from SARS-CoV-2 infection that can drag on for months. Medical experts don’t know if they can drag on for years; the disease hasn’t been around long enough to make that determination.

Yesterday, the National Institutes of Health unveiled a $470 million study that it hopes will mine data from 30,000–40,000 people who suffer from long COVID. The effort is called the REsearching COVID to Enhance Recovery (RECOVER) Initiative.

In making the announcement at a news briefing yesterday, NIH Director Francis Collins, MD, PhD, voiced some of the questions driving the need for answers. One question being, for instance, what causes long COVID? (The scientific name for long COVID is PASC, for post-acute sequalae of SARS-CoV-2.)

Collins asked: “Is it a misfiring of the immune system that fails to reset after the infection with this coronavirus? Is it a triggering of some metabolic dysfunction? We don’t know.”

The Centers for Disease Control and Prevention (CDC), in a recent study in its Morbidity and Mortality Weekly Report, says that long COVID symptoms last longer than 4 weeks “among persons who self-reported ever receiving a positive SARS-CoV-2 test result with the prevalence of similar symptoms among persons who reported always receiving a negative test result.”

The self-reported aspect of long COVID tracking matters since medical experts, as Collins said, still don’t quite know what it is. Self-reporting will be an important element of RECOVER, as the NIH has set up a website where people who would like to volunteer can sign up.

The CDC says that long COVID symptoms can include hair loss, cognitive disfunction, muscle pain, headache, joint pain … it’s a long list; take a look at this table.

At yesterday’s press briefing, Collins said that “the diversity of symptoms and presentations leads us to believe that long COVID is not just one condition. The only way, therefore, we’re going to sort this out is with very large studies that collect lots and lots of data about symptoms, physical findings and laboratory measures.”

RECOVER will involve more than 100 researchers at more than 30 institutions across the United States. As with everything involving an ever-mutating virus, getting the information quickly matters. Among the sources for data will be wearable devices. Data will also be retrieved from laboratory tests, clinical information, and an analysis of those in various stages of recovery from COVID-19. “With immediate access to data from existing, diverse study populations, it is anticipated researchers will be able to accelerate the timeline for this important research,” the NIH said in its press release.

Another particularly troublesome known unknown about COVID-19 involves its effects on children. Medical literature affirms that children are at little risk of suffering from severe illness or death from COVID-19. But with cases of pediatric COVID-19 growing exponentially as schools across the country reopen, medical experts worry that SARS-CoV-2 can come back and haunt us in the future.

Kevin Kavanagh, MD, a member of Infection Control Today®’s (ICT®) Editorial Advisory Board, warned in July that COVID-19’s effects might be something the world will need to deal with long after infections, hospitalizations, and deaths from the disease recede to levels where we can get our old lives back.

Kavanagh worries that far from being a return to pre-COVID normal, when the pandemic finally recedes it will leave a destructive overload of disabilities behind.

“We need to have as much diligence in preventing chronic disability in the young as we do in preventing deaths in the elderly,” Kavanagh told ICT®. Kavanagh’s concern dovetails with those of the author of a study in Circulation in April with the ominous title: “Avoiding the Coming Tsunami of Common, Chronic Disease: What the Lessons of the COVID-19 Pandemic Can Teach Us.”

Robert M. Califf, MD, of Duke University School of Medicine, wrote that “during the past year, clinicians and the public have been focused on the coronavirus disease 2019 (COVID-19) pandemic and its associated societal and economic effects. However, once the acute phase of this crisis has passed, we will face an enormous wave of death and disability as a result of common chronic diseases (CCDs), with cardiometabolic diseases at the crest.”

On a more hopeful note, Califf adds that “although the pandemic has created additional impetus that unless heeded will amplify the consequences of this burden, the rapid adaptations and innovations in care and research prompted by the urgent response to it may also offer us the means to stem this flood.”

Of immediate concern, is multisystem inflammatory syndrome in children (MIS-C). The RECOVER project will also mine data about MIS-C and also MIS-A, or multisystem inflammatory syndrome in adults.

According to the CDC, MIS-C “is a condition where different body parts can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs.” As with the case of long COVID, the CDC does not “yet know what causes MIS-C. However, many children with MIS-C had the virus that causes COVID-19, or had been around someone with COVID-19.”

Linda Spaulding RN-BC, CIC, another member of ICT®’s Editorial Advisory Board, told ICT® in a Q&A in February that it’s a mistake to underestimate the harm COVID-19 can do to younger people.

“People keep talking about, ‘Well the young kids. They’ll get it. They’ll get over it. It’s no big deal.’ But that’s not the reality of it. There are many young kids that have gotten COVID and are now dealing with what they’re calling long-haulers disorder. And that’s when they do have heart damage, or they have lung damage. And it appears right from what we know is that will be lifelong. The young people that think, ‘Oh, I can go do what I want to do. And if I get COVID, that’s fine. I’ll get over it.’ That’s not the case.”