Much of the United States and indeed most of the world has reduced or dropped restrictions aimed at reducing transmission of COVID-19. However, the virus is still infecting people, and a new version of the Omicron variant arrived in Texas recently.
Then there are those for whom the pandemic remains a daily part of life because of long COVID, defined as those who experience a wide range of symptoms that can last weeks, months or even years after the initial infection.
Some people with long COVID develop myalgic encephalomyelitis or what is often called chronic fatigue syndrome, or ME/CFS, according to Amanda Morris. Morris, who covers disability for the Washington Post, said there is no known cure for ME/CFS and doctors are still working on strategies to help people manage the condition. Listen to the story above or read the transcript below.
This transcript has been edited lightly for clarity:
Texas Standard: Let’s begin with some numbers here. How many people have developed long COVID in the U.S. and how many of those have developed into this myalgic encephalomyelitis?
Amanda Morris: We don’t have definitive data on this, but the U.S. Census Bureau and the CDC have found that about one in 13 U.S. adults — or about 19.3 million adults — develop long COVID symptoms that last for at least three months. And among those, some studies suggest that about half of people with long COVID fit the criteria for a condition known as myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.
With chronic fatigue syndrome, I think a lot of people think you are just tired a lot. But you’re saying that officials are sort of leaning more into this ME/CFS short as a way of describing other symptoms that have been noted.
It’s not just about fatigue. Although fatigue is a really big characteristic of this condition, it’s not the only one. A lot of people with ME/CFS experience other symptoms that get worse when they try to do too much activity. So even if they’re just tired, when they try to push through it, if they’re like, ‘Oh, you know what, I’m just tired. Let me do it anyway,’ they actually experience other symptoms that can include gastrointestinal symptoms, cognitive impairment or other orthostatic-related symptoms.
I’ve had people tell me that their fingers just ache and hurt, that they couldn’t even pick up their phone. Other people have told me that they just literally cannot think, they can’t speak sometimes because they are just having so much cognitive trouble. Some people described it to me as feeling like you’re dragging your body through wet cement. It’s a debilitating fatigue that you really can’t push through. And a key trait of this is that when you do try to push yourself and you overexert yourself past what your energy limits are, you tend to experience what they call a crash or post-exertional malaise. And that’s when all of these other symptoms just get so much worse.
I think a lot of folks, listening to your description might think, ‘Well, gosh, some of that sounds like me, and I sometimes push through.’ How do you know if you’ve got this specific issue that you’re addressing? Maybe you had COVID, but you hadn’t even thought about long COVID until you thought about that time you tried to push through it and wound up with what you were describing?
It’s really hard, actually, to get a diagnosis for ME/CFS, because a lot of doctors are not as well trained in it and there’s not as much awareness about it. A lot of people who have this don’t realize it at first, and they do try to push themselves because they think, “you know, I’m just tired,” right? But the difference between just being tired and having this condition is that if you or I were tired and we tried to push through it, you know, maybe we’ll feel crappy that day. But the next day or the day after we bounce back. People with this condition, when they try to push through, it, actually makes it worse and worse so they feel more and more tired. And sleeping isn’t actually restorative. It doesn’t actually really help you bounce back.
We don’t know exactly what causes ME/CFS but researchers have found that the way that people with ME/CFS use energy and bounce back from that is different than normal people. So if you or I run up the stairs and we get tired, we’ll be able to recover. But people with ME/CFS, their bodies aren’t able to recover as easily.
Say something about pacing and why it seems to help people who have chronic fatigue syndrome or ME/CFS.
Pacing is an activity management strategy, also sometimes called a symptom management strategy. And it’s basically a strategy where people will carefully limit their daily activities and try to reduce the amount of energy that they expend every day. So this might mean doing less chores around the house or breaking them up into smaller parts and taking rest in between. So maybe one day you’re chopping vegetables and the next day you’re cooking your dinner.
Is there anything people can do to avoid long COVID or avoid chronic fatigue syndrome specifically? What are medical officials saying about that?
The easiest thing to do is to avoid getting COVID. But we all know that that is increasingly difficult to do. Unfortunately, the triggers for long COVID and for ME/CFS aren’t fully understood by scientists. I mean, ME/CFS existed even before long COVID and it seems to be triggered often by stress or a viral illness, but it hasn’t really been well-studied.
We do know that there are some risk factors for both long COVID and for ME/CFS. You are more likely to develop these conditions if you’re a woman and for long COVID other things like being overweight or having underlying health conditions can increase your risk. Vaccination seems to help reduce the risk for long COVID, but it’s unclear exactly how much it helps. Some studies have found that it can cut your risk in half, but others have suggested that it’s only reducing your risk by about 15%.
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