A long-awaited study focusing on the most common groups of symptoms for people with long-term covid may not bring the relief millions of Americans and doctors have been seeking.
The study, one of the first studies of the National Institutes of Health’s $1 billion RECOVER program, does not provide a standardized definition of the condition. Researchers say it is a first step in identifying “common language” for scientists working on treatments for the condition.
“I think the amount of science that will come next is going to be an avalanche,” said study author Dr. Leora Horwitz, a professor of public health and medicine at New York University Grossman School of Medicine, as well as the director of the Center for Healthcare Innovation and Delivery Science at NYU Langone Health.
The new study, published Thursday in the Journal of the American Medical Association, looked at data from 9,764 adults in the RECOVER trial, which has been recruiting participants since last year. The vast majority, 8,646 people, had previously been diagnosed with Covid.
While hundreds of symptoms potentially related to long-term covid have long been reported — mostly through patient anecdotes — the new study focuses on 12 of the most common.
Long Covid symptoms include:
- Persistent fatigue.
- Brain fog.
- Abnormal movements.
- Upset stomach.
- Lack of sexual desire.
- Loss of smell or taste.
- Feeling sick or overly exhausted after physical activity, also known as post-exertional malaise.
The purpose of the article is not to limit the definition of long Covid to just these 12 symptoms. It’s meant to focus future research on those symptoms as scientists try to figure out how long Covid has been affecting the body in so many different ways.
It also includes a scoring system that can be tailored to each patient based on the severity of their symptoms.
“This is a tool that can be used to identify people with long Covid with the goal of doing more research,” said Andrea Foulkes, the principal investigator of the RECOVER Data Resource Core, as well as Massachusetts General Hospital’s director of biostatistics.
“The importance of that is that we can then start unraveling the mechanisms for each of those different manifestations. And then, of course, ultimately the goal is to identify treatments,” Foulkes said.
But the paper, which people who still have long Covid symptoms and the doctors who treat them eagerly await, has drawn some criticism.
“I think people will be impressed by a ‘milestone’ document that details the presence of symptoms that people have long known are a problem,” said Jim Jackson, the director of Behavioral Health, ICU Recovery Center at the Vanderbilt University Medical Center in Nashville, Tennessee, and author of “Clearing the Fog: From Surviving to Thriving With Long Covid – A Practical Guide.”
“This is not a paper that offers solutions, that offers therapies. And that’s what people desperately want: hope in the form of treatments,” Jackson said.
What is Brain Fog?
There needs to be more specificity in describing the symptoms, Jackson said, beating the vagueness of the term “brain fog.”
“What exactly does brain fog mean? If we call it brain injury, then there is a treatment pathway. We know how to treat brain injury,” Jackson said. “We do cognitive rehabilitation. If we call it brain fog, what the hell are you doing with that?”
Horwitz added some clarity during an interview.
Brain fog in these cases means you have to read something several times to understand it, you have trouble keeping appointments that are not part of a weekly routine, and you have trouble following complex directions.
Another term “abnormal movements” was also vague.
During interviews with NBC News, RECOVER researchers were unable to further define what patients meant by “abnormal movements” as a symptom. “The finding is novel and requires further study,” Foulkes said.
“If someone walks into my office and I’m trying to screen them or talk to them about whether they’ve had Covid for a long time,” says Dr. Hugh Cassiere, director of critical care at South Shore University Hospital, part of Northwell Health in New York. York, “you’ve made that useless as a symptom to me because you can’t define it.”
Neither Jackson nor Cassiere were involved in the RECOVER process.
Recruiting for long covid treatment trials
The study also found that long Covid patients who were not vaccinated were more likely to experience severe symptoms, as were those who were infected before the omicron variant emerged.
They also found that some symptoms tend to clump together: post-exertional malaise and fatigue, for example, or fatigue, dizziness, brain fog, upset stomach, palpitations, and post-exertional malaise all together in other cases.
Researchers said they expect to begin enrolling long Covid patients in clinical trials for treatments this year.
“We don’t want to forget these people as we move into different phases of a pandemic,” said Tanayott Thaweethai, another author of the study and associate director of biostatistics research and engagement for MGH Biostatistics.
“We want to think really hard about how we study them, how we try to understand what’s going on in their tissues in their body. All of this takes time to understand such a complicated chronic disease,” Thaweethai said.
In April, 15.1% of the more than 100 million Americans with Covid had long-term symptoms, according to a government survey.
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