Tanya Lewis: Hi, this is Your Health, Quickly, a Scientific American podcast series.
Josh Fischman: We bring you the latest vital health news: Discoveries that affect your body and your mind.
Lewis: And we break down the medical research to help you stay healthy.
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I’m Tanya Lewis.
Fischman: I’m Josh Fischman.
Lewis: We’re Scientific American’s senior health editors.
Fischman: Today, we are delving into the disease originally known as
“chronic fatigue syndrome.” Now it’s called ME/CFS. Recently, a big study looked at people who got the illness after an infection, and it turned up a few clues about what might be causing their debilitating, often lifelong symptoms.
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Lewis: The disease once called chronic fatigue syndrome has historically been dismissed by doctors and other health care professionals as a psychosomatic illness, without any real physiological causes.
But in recent years, researchers have begun to take the disease—whose official full name is now myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short —more seriously.
Fischman: That really is a mouthful, and I’m not even going to try it. But Tanya, what does it mean?
Lewis: Well, it comes from myalgia, which means muscle pain, and encephalomyelitis, which is inflammation of the brain and spinal cord due to an infection. And while it’s sometimes referred to as just chronic fatigue syndrome, people with ME/CFS prefer to call it ME, because it’s really more than just fatigue.
Fischman: And during the COVID pandemic, millions of people developed something that was very, very similar to ME/CFS, and that’s long COVID. So, scientists started taking that a lot more seriously. Even before the pandemic, I know the National Institutes of Health was starting to study ME/CFS.
Lewis: Yeah, that’s right. So Francis Collins, who was the director of NIH at the time, approached a scientist named Avindra Nath and asked him to launch a comprehensive study of people with ME/CFS to really try to find some clues as to what was causing their exhausting symptoms.
Fischman: Yeah, like you said in addition to fatigue, there’s a whole bunch of other very serious problems.
Lewis: People with ME/CFS often experience brain fog, hypersensitivity to light and short-term memory problems. And another really common issue is something called post-exertional malaise—it’s basically a worsening of your symptoms after any kind of physical activity. And there aren’t really good treatments for it.
Fischman: I’ve known some people with ME/CFS, and it can be really devastating.
Lewis: Yeah, it really can. So starting in 2016, Avi and his colleagues set out to study this, but since ME/CFS is sort of an umbrella term for a wide array of disease forms, they wanted to find a group of people who fit a very specific patient profile. They specifically recruited people who had developed the disease after an infection, and they also had to be well enough to travel to NIH for the experiments.
They ended up with a total of 17 participants with ME/CFS, and 21 healthy volunteers. Next, they set about putting the participants through a whole series of tests of pretty much every organ system.
Avindra Nath: I'm Avi Nath. I'm the clinical director of the National Institute of Neurological Disorders and Stroke and also the chief of the section of infections of the nervous system.
We did a very thorough investigation, looking at MRI scans, cognitive function. We did spinal taps, lots of blood draws at various time points. We looked at the immune function, metabolomics. We looked at the gut microbiome, we looked at their heart rates and blood pressures and autonomic function.
Fischman: I know that it was a really complete workup. What did they find?
Lewis: A lot of this is described in an online news story by writer Kamal Nahas, which we’ll link to in the transcript.
Here’s Avi:
Nath: We found that there were multiple systems that were involved. There wasn't a single abnormal observation. We found that there were a number of abnormalities. One, we found that there was activation of the immune system in the ME/CFS patients.
Lewis: It was almost like the immune system was “exhausted” from being chronically activated.
Nath: And, interestingly, we found that there were differences between men and women, such that women had predominantly B cell pathways that were activated, and in men, it was predominantly T cells. And so that in itself is a very important observation because it tells us that what may work for women may not work for men.
Lewis: ME/CFS occurs predominantly in women, but men can obviously get it too, so treatment could look for different for men vs. women.
The researchers also found differences in the brains and nervous systems of people with ME/CFS.
Nath: We found a lot abnormalities in the metabolites and the neurotransmitters. We tested the brain in many different ways by stimulating the brains with transcranial magnetic stimulation and a functional MRI scan, whereby you can look at the metabolism of the brain in a resting state and when you exercise the brain. In order to exercise the brain, we did a simple motor task. We found that the motor cortex itself was fine, but there’s an area of the brain that integrates all the information together, and it’s at the junction of the temporal and parietal lobe. And we found that that was inactive. And it’s not a structural abnormality, it’s a functional abnormality.
Lewis: Avi says this functional brain abnormality might explain the post-exertional malaise many people with ME/CFS experience. But it’s a pretty preliminary finding.
Fischman: Right, that doesn’t really seem like it would explain the whole story.
Lewis: Right, probably not. I actually talked to one of the study participants, a journalist named Brian Vastag.
Fischman: Oh, Brian is actually a friend of mine. He’s the reason NIH started doing this study because he wrote an op-ed in the Washington Post complaining that scientists weren’t studying ME/CFS enough.
Lewis: That’s really interesting. I know he’s been a big t activist for people with ME/CFS.
Fischman: I've known Brian for a long time. I've known him before he got sick and after he got sick.
And, I can tell you it's made a huge difference in his life. He was a great journalist. And then he couldn't do that anymore. He's a really bright, very curious, and very intelligent person. And all of a sudden he just didn't have this body that would let him follow through with the things that he wanted to find out about. Because, you know, he just didn't have the physical ability.
It was kind of like having this really bright mind locked in this body that wouldn't work anymore. And, he doesn't really know what caused it.
Brian Vastag: I had a sudden fever, you know, basically went from being well to being sick in, like, five minutes. It was very stark.
Lewis: He had a false positive test for West Nile virus, but they never actually found the true pathogen. And I asked him what he thought about the study.
Fischman: Brian wasn’t too thrilled about the study results Nath was talking about before.
Vastag: The findings were pretty meager, I'm just so conflicted about how the study turned out.
Lewis: Yeah, I mean, he’s glad they did the study, but he didn’t really think it found a whole lot that was new.
He also took issue with the fMRI findings, which he thought was not an appropriate test and was only based on a handful of participants. Overall, though, the study may have been too small to draw strong conclusions.
That said, he did think the study helps validate that ME/CFS is a real illness, with real biological causes. And that’s important, given that many doctors still dismiss people with the disease, and we don’t really have that many treatments.
Fischman: Ok, that’s Brian. What about Avi? Does Avi think the study will help lead to potential treatments?
Lewis: Avi, really hopes this will lead to treatments. Even though the study didn’t find so-called “autoantibodies,” a sign that the body is attacking itself, like some studies have found. It did find signs of B and T cell wonkiness, if you will. And the treatments could depend on your sex. So, in women, you could try checkpoint inhibitors, which are used as a type of immunotherapy for cancer. And for men, perhaps you could try various T cell therapies,
Vastag: They need to do treatment trials, like, that needs to be the next step. Patients are desperate and patients need treatment. And we can't just wait to figure out the entire pathophysiology, like we need to start.
Lewis: So researchers are already testing some of these therapies.
Fischman: Well, I’m glad to hear they’re starting. But what about long Covid—could this research benefit people with that?
Lewis: Yeah, it might. There’s certainly a lot more interest in these conditions now, given how many people have long Covid.
Fischman: That’s really important because ME/CFS and long COVID both take a real toll. They ruin lives.
Vastag: I want people to know that this is a matter of life or death. You know, you try 100 different medicines, and nothing ever helps you. It's really hard to keep going.
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Fischman: Your Health, Quickly is produced by Timmy Broderick, Tulika Bose, Jeff DelViscio, and by us. It’s edited by Elah Feder and Alexa Lim. Our music is composed by Dominic Smith.
Lewis: Our show is a part of Scientific American’s podcast, Science, Quickly. Subscribe wherever you get your podcasts. If you like the show, give us a rating or a review!
And if you have a topic you want us to cover, you can email us at Yourhealthquickly@sciam.com. That’s your health quickly at S-C-I-A-M dot com.
Just a quick request: my colleague Lauren Young and I are working on a podcast series on caregiving for older family members, and the challenges of navigating care at-home vs. institutional care. We’re hoping to speak to people who have experience caring for their own family members. Please email yourhealthquickly@sciam.com with the subject “caregiving” if you’re interested.
For Your Health, Quickly, I’m Tanya Lewis.
Fischman: AndI’m Josh Fischman.
Lewis: See you next time.
