Texas

Prolonged COVID can lead to chronic fatigue syndrome. Doctors are working to help patients cope with the disease.

Most of the United States, and indeed most of the world, have lowered or eliminated restrictions designed to reduce the transmission of COVID-19. However, the virus is still infecting humans, and a new version of the Omicron variant has recently arrived in Texas.

In addition, there are those for whom the pandemic remains a part of everyday life due to long-term 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-term COVID develop myalgic encephalomyelitis, or what is often referred to as chronic fatigue syndrome, or ME/CFS, according to Amanda Morris. Morris, who covers disability with 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 lightly edited for clarity:

Texas Standard: Let’s start with some numbers. How many people in the US developed long-term COVID and how many of them developed this myalgic encephalomyelitis?

Amanda Morris: We don’t have hard data on this, but the US Census Bureau and CDC found that about one in 13 adults in the US — or about 19.3 million adults — develop long-term COVID symptoms that last at least three months. And among them, some studies show that about half of people with long-term COVID meet 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’re just really tired. But you say officials are kind of leaning more towards this abbreviation ME/CFS as a way of describing the other symptoms noted.

It’s not just fatigue. While fatigue is indeed an important characteristic of this condition, it is not the only one. Many people with ME/CFS also have other symptoms that worsen when they try to exercise too much. So even if they’re just tired, when they try to get through it, they’re like, “Oh, you know what, I’m just tired. Let me do it anyway,” they actually experience other symptoms, which may include gastrointestinal symptoms, cognitive impairment, or other orthostatic symptoms.

I’ve had people tell me that their fingers just hurt and hurt, that they couldn’t even pick up the phone. Other people have told me that they literally can’t think, sometimes they can’t speak because they have too many cognitive problems. Some people have described it to me as feeling like you’re dragging your body across wet cement. This is a debilitating fatigue that is really impossible to deal with. And the key feature of this is that when you really try to push yourself and overexert yourself beyond your energetic limitations, you tend to experience what they call collapse or post-exercise sickness. And then all these other symptoms become much worse.

I think a lot of people, listening to your description, might think, “Well, hell, some of this sounds like me, and I get through sometimes.” How do you know if you have a specific problem that you are solving? Maybe you had COVID but didn’t even think about long-term COVID until you thought about the time you tried to get through it and ended up as described?

It is actually very difficult to make a diagnosis of ME/CFS because many physicians are not that well trained in it and there is not much awareness about it. A lot of people who have it don’t realize it at first and they try to push themselves because they think, “You know, I’m just tired,” right? But the difference between being just tired and this state is that if you or I are tired and try to get through it, you know, maybe we’ll feel crappy that day. But the next day or the day after, we are back to normal. People with this condition, when they try to survive, actually make it worse and worse, so they feel more and more tired. And sleep doesn’t really restore. It won’t really help you bounce back.

We don’t know exactly what causes ME/CFS, but researchers have found that the way people with ME/CFS use energy and bounce back is different from normal people. So if you and I run up the stairs and get tired, we can recover. But people with ME/CFS, their bodies don’t recover as easily.

Tell us something about pacing and why it helps people with chronic fatigue syndrome or ME/CFS.

Stimulation is an activity management strategy, also sometimes referred to as a symptom management strategy. Basically, it is a strategy in which people carefully limit their daily activities and try to reduce the amount of energy they expend each day. So it could mean doing less chores around the house, or breaking it down into smaller pieces and resting in between. So perhaps today you are chopping vegetables, and the next day you are cooking your own dinner.

Is there anything people can do to avoid prolonged COVID, or in particular to avoid chronic fatigue syndrome? What do medical professionals say about this?

The simplest thing is not to get COVID. But we all know that this is getting harder and harder to do. Unfortunately, the triggers for prolonged COVID and ME/CFS are not fully understood by scientists. I mean, ME/CFS has been around since long before COVID, and it seems to be often triggered by stress or a viral illness, but it’s not really well understood.

We know that there are some risk factors for both long-term COVID and ME/CFS. You are more likely to develop these conditions if you are a woman, and with long-term COVID, other factors, such as being overweight or having underlying medical conditions, may increase your risk. Vaccination seems to help reduce the risk of long-term COVID, but it’s not clear exactly how much it helps. Some studies have shown that it can halve the risk, but others suggest that it only reduces the risk by about 15%.

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