In 2023, infectious disease research inched closer to, but still fell short of, conclusively landing on a standard definition for long COVID. There's still much to discover about how the post-infection condition manifests in some patients, but not others, as well as therapeutic solutions and for what length of time long COVID may actually last, experts told Becker's.
The government has also ramped up resources to support long COVID research and care with the official launch of the Office of Long COVID Research and Practice and Long COVID Clinical Trials, which the HHS announced in July.
Coming up on nearly four years since the COVID-19 pandemic's onset, infectious disease experts across the globe are still trying to get a clear understanding of the condition.
But part of the reason it is so difficult to piece is because "what a lot of experts think is that long COVID is not actually a single diagnosis, and that there may actually be several forms of long COVID depending on how the virus infects your body — or more importantly — how the immune system reacts to the virus," said Amy Edwards, MD, medical director of the Pediatric COVID Recovery Clinic at UH Rainbow Babies and Children's Hospital in Cleveland.
The different phenotypes of long COVID cause different symptom presentations, Dr. Edwards told Becker's.
The research on the condition, its differing symptom presentations, and work to hone in on therapeutic solutions for long COVID is really just beginning, according to Michael Gottlieb, MD, vice chair of research and the director of the Emergency Ultrasound Division at Rush University in Chicago.
"Going into COVID, we had existing knowledge from other diseases like post-influenza, post-epstein barr, etc., for which there are persistent symptoms that happen after certain viral illnesses," Dr. Gottlieb told Becker's. "But we've never seen anything like this: the scale of COVID, the impact of how many people had contracted COVID, and the scale of the persistent symptoms that evolved past COVID at this type of level. So coming into it — even with some knowledge from other diseases — there was a huge learning curve."
'Patients are allowed to struggle with diseases we don't yet understand'
If it wasn't enough to treat patients while also researching the post-infection condition of a virus that caused a global pandemic just a few years ago, breaking through the stigma that surrounds it while doing all of that might be.
In some ways, long COVID's presentation of symptoms is "invisible" — no scars or rashes, but often chronic fatigue combined with other internal conditions — and that, Dr. Edwards and Dr. Gottlieb noted, can make it easy for some to dismiss a person's experience of the condition all together.
"There's definitely a stigma that people are experiencing…" Dr. Gottlieb said. "The other challenge that we face is without an adequate or concrete definition, I think the public, the patients themselves, and healthcare professionals are struggling to define cases that don't clearly fit within the existing categories. That's just a call to action: We need to have a robust, consistent definition that is able to be inclusive enough to capture the breadth of long COVID and the experiences that people are living through."
Similarly, Dr. Edwards echoed that without a clear definition about the condition and how it presents, the patients she has treated with long COVID have sometimes been told they are making it up or that it's all in their head because the condition doesn't fit into any one box.
"As physicians we need to be humble and admit we don't know everything" Dr. Edwards said. "Patients are allowed to struggle with diseases we don't yet understand."
Another misconception she runs into with her patients is that it has been said that children can't get long COVID.
Right now, in her pediatric long COVID clinic, Dr. Edwards said the youngest patient she is treating for long COVID is 4. She is also treating a child who is 6, two who are 9, and the rest of the patients are above 10, she told Becker's.
"Sure, 4-year-olds, can lie through their teeth. Boundary pushing is literally what a 4-year-old does, right? But 4-year-olds don't lie about this," Dr. Edwards said. "People need to understand, these patients aren't making it up. They are struggling to live their lives in a way that we take for granted. And rather than dismissing them, and marginalizing them — as we have been doing for decades with people with chronic fatigue syndrome — it's time for us to admit that just because we haven't figured it out, doesn't mean it's not real."
The long road ahead
Some of the questions that are most important to answer next to add clarity to the picture of long COVID, according to Dr. Edwards and Dr. Gottlieb, are about just how long the long COVID condition may last, finding better methods to catch potential missed cases, and therapeutics to treat its symptoms.
"A lot of us in the field of long COVID do believe that that long COVID is somewhere on that spectrum of myalgic encephalomyelitis," Dr. Edwards said. "They're either the same illness or similar illnesses, or at least have similar processes to them. And since we know that MECFS can last for life, there's no reason to suspect long COVID can't as well. However, by that same token, we also know that some people do recover from chronic fatigue syndrome. And I can tell you, in my own experience, that some people do recover from long COVID. So it's probably a spectrum where some people will have longer COVID than others. But it'll take us decades to know whether it can truly last for life…"
And while some of this work may take decades, they said collaborating as physicians and approaching the field of work with humility is crucial.
"As we go through this, we have to continue to learn, to evolve, and to understand that what we know now may change over time," Dr. Gottlieb said. "We've seen this time and time again throughout the pandemic. There have been things that we tried out and they've been very successful. Vaccination is a great example of that. There's also medications that were well intended and just turned out not to work despite how they theoretically could have. That's not to say that we shouldn't keep trying, but that we need to continue to push ourselves to learn more and to figure out how best to care for our patients."