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How Chronic Fatigue Syndrome is helping doctors understand long COVID

Dr. Liisa Selin and Anna Gil watch as research technician Taeva Cohen prepares blood samples for analysis in the pathology lab at the UMass Chan Medical School. (Jesse Costa/WBUR)
Dr. Liisa Selin and Anna Gil watch as research technician Taeva Cohen prepares blood samples for analysis in the pathology lab at the UMass Chan Medical School. (Jesse Costa/WBUR)

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Since the outbreak of the pandemic, scientists have learned a lot about COVID.

Long COVID remains a big mystery.

“Long COVID is destroying lives. It is actively destroying lives. And right now, there is no known cure for long COVID,” Dr. David Putrino says.

Meanwhile, researchers who’ve spent decades studying Chronic Fatigue Syndrome also known as ME/CFS, are saying, ‘We can help.’

“There is a lot to be learned from ME/CFS research and it would facilitate what’s happening in long COVID research and move it along a lot more quickly, if there was better coordination,” Dr. Lucinda Bateman says.

Today, On Point: How doctors studying a condition that many in the medical community have long been skeptical about, could help reveal the mysteries of long COVID.


Dr. David Putrino, director of rehabilitation innovation for Mount Sinai Health System. (@PutrinoLab)

Dr. Lucinda Bateman, founder and medical director of the Bateman Horne Resource Center. (@LBatemanMD)

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Hanna Tripp, director of operations for the Afghan Medical Professionals Association of America.

Interview Highlights

On what it’s like to suffer from long COVID

Dr. David Putrino: “This is a huge problem. It is certainly not going away. And as you mentioned, it’s affecting so many Americans on a daily basis. The people who come to our clinic are typically reaching a point with their symptoms where they’re no longer able to mask what they’re experiencing. I think many Americans right now are still feeling unwell, months out from their acute COVID infection, but they’re still able to function. And that they’re trying to put it to the back of their mind and and get on with their daily life.

“And unfortunately, what we’re learning is that is the wrong approach. This is a progressive illness that slowly worsens over time, especially if you try to push through the symptoms you’re experiencing. And so we typically see patients as they reach that point of realization that this is not going away. And the patients who come to see us from a general point of view, you know, the average age is early forties. The average medical history is typically unremarkable. So previously fit and healthy, no noticeable co-morbidities like chronic lung disease or chronic heart disease. These are people that used to run marathons and and be able to take on a very busy day, are suddenly coming to us.

“And at the point that they reach us, most of them have had to make accommodations in their work, either switching over to part time or in fact becoming unemployed as a result of their symptoms. They’re experiencing cognitive impairment that we would expect to see in individuals with a traumatic brain injury or a stroke, not a previously fit and healthy 40-something year old who has just experienced an acute COVID infection.

“And then the degree of severe fatigue and post exertional symptoms, which is different from fatigue, which is a whole subset of symptoms that worsen whenever someone with long COVID tries to do either physical work, like climbing up a flight of stairs with their groceries or cognitive work, like sitting in front of a computer and trying to get through a day of of remote work. The burden of these symptoms is astounding.”

On the difficulty of diagnosing long COVID

Dr. David Putrino: “I would actually push back on the idea that long COVID is difficult to diagnose. I would say diagnosing long COVID is one of the easiest things you can do. You listen to your patient. You hear about the symptoms that they’re experiencing. You do your best to see if the symptoms that they’re experiencing are related to any preexisting health conditions.

“But then if there is no link to preexisting health conditions and they have experienced a recent SARS-CoV-2 infection, that is all you need for a diagnosis of long COVID. The CDC has been very broad and very, very clear about the idea that long COVID is a clinical diagnosis, meaning you don’t need a lab test to diagnose it as a physician. You simply need to listen to the symptoms that your patients are telling you that they have.”

On how ME/CFS research can help our understanding of long COVID

Dr. Lucinda Bateman: “It’s a clinical diagnosis, it’s considered a post-viral syndrome. In many, many cases, we make a very late diagnosis of ME/CFS usually, so we lose track of what the inciting infection or insult might have been. But the presentation is defined by severely impaired function and inability to maintain activity without illness relapse.

“That’s called post-exertional malaise. And those are the hallmarks and symptoms of ME/CFS, along with the core symptoms of cognitive impairment and disordered sleep, sometimes pain, all kinds of pain syndromes and orthostatic intolerance, which is a problem regulating circulation in the body.”

What’s one of the biggest lessons that we can apply from ME/CFS to long COVID?

Dr. Lucinda Bateman: “I think the most important takeaway, or something I would like everyone, particularly clinicians, to know … is this illness is devastating. It impairs the ability to function physically and cognitively. And if you try to push through, sometimes things get worse and worse. That may be why it’s a progressive illness, in the way we’re seeing it. We need to understand that science better. But until then, every clinician who encounters patients needs to be careful about giving their patients support. Helping them pace or downsize their activity to minimize symptom exacerbation, and give them what they need to function with their impairments.”

On research needed for our future understanding of long COVID

Dr. David Putrino: “The large proportion of work that needs to occur right now in long COVID is understanding the different endotypes of long COVID. And what I mean by that is long COVID, once again, I sort of highlighted that it’s easy to diagnose long COVID. Because of the diagnostic criteria that the CDC put forward. But what is less easy is understanding what is behind the symptoms that people are experiencing.

“We already have really dramatic evidence out there to show that individuals with long COVID may be experiencing viral persistence, meaning that the SARS-CoV-2 virus is still active in their bodies and not being cleared by their bodies. So that endotype of long COVID could benefit from an antiviral like Paxlovid. We’ve seen studies that show that people with long COVID experience reactivation of existing viruses in their bodies, such as Epstein-Barr virus, and those individuals might benefit from targeted therapeutics that address those existing viruses and outbreaks of those existing viruses in their body.

“We see chronic inflammation that may need to be treated with systemic anti-inflammatory or targeted anti-inflammatory medications. We also see dysautonomia. That is as a result of a nerve in the body … that is is functioning improperly. And those people need autonomic rehabilitation and perhaps other modalities to treat the dysautonomia, but recover quite nicely with that intervention.

“So understanding the different endotypes, and understanding also that someone with long COVID could have two or three of those endotypes is very, very important for the next steps of clinical trials that will attempt to treat long COVID.”

Related Reading

Recover COVID Study: “RECOVER COVID” — “The National Institutes of Health (NIH) created the RECOVER Initiative to learn about the long-term effects of COVID.”

This article was originally published on WBUR.org.

Copyright 2022 NPR. To see more, visit https://www.npr.org.

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