If you’re feeling tired during the day, some common advice might be to go for a walk, do some light exercises, or simply take a nap. But for some people, no amount of sleep or calisthenics will help. That’s life with myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS.
And while there’s still a lot scientists don’t know about the condition, they’ve learned quite a bit in the last few years about how different it is from other kinds of fatigue. Including the fact that exercise actually makes it worse. [intro music] You might have heard of chronic fatigue before as a social media buzzword, or maybe as a symptom of other chronic illnesses.
But when we’re talking about ME/CFS, just calling it chronic fatigue syndrome doesn’t tell the full story. It’s not the kind of fatigue you might feel after pulling an all-nighter. ME/CFS is a neurological disease.
It’s not just being tired because the grind never stops. /CFS When no amount of sleep makes you feel refreshed, you may have ME/CFS. Or when exercise makes you feel like you have the flu, that’s also a symptom.
There are probably 15-30 million people around the world living with ME/CFS. If you haven’t heard of the condition, maybe that’s because some researchers estimate that around 90% of people with it are undiagnosed! That’s a big deal because, as you might have gathered from the symptoms I just mentioned, it can totally change the way you live your life.
You may find that doing chores or schoolwork is suddenly much more exhausting than before. You may be forced to give up hobbies that once filled you with joy because your body can’t keep up with them anymore. Ultimately, up to 75% of people with ME/CFS are unable to work and some can’t leave their bed.
And a reinvigorating stroll around the block won’t help with these symptoms. People with ME/CFS see their blood oxygen levels and heart rate drop significantly after exercising. AKA, pretty much the opposite of how you want to feel after a workout.
One of the most characteristic symptoms comes after physical or mental strain. It’s called post-exertional malaise, or PEM, and it’s a huge, debilitating result of ME/CFS. .
It can happen when you’ve spent a lot of energy of any kind, including exercise, writing, sensory overload, or stress. But it can be difficult for people with ME/CFS to realize what caused that response because PEM usually doesn’t show up until about 24 hours after whatever happened to trigger it. .
So living with ME/CFS comes with a good amount of detective work to figure out what triggers your symptoms and whether they’re even symptoms of the condition or something else entirely. The whole diagnosis process is enough to earn you one of those Sherlock Holmes hats. This SciShow video is supported by JMP, a statistical analysis software hat makes powerful analytics quick and accessible.
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com/scishow to see the benefits of visual statistics for yourself. ME/CFS comes from a combination of both genetic and environmental factors, but it’s most often triggered by an infection from another disease. Epstein-Barr virus, the virus that causes mono, is one of the more common culprits for triggering ME/CFS.
To be clear, not everyone who gets mono will develop it. For the people who do, it can be confusing and frustrating to feel like you’re not getting better, while other people recover in a few weeks. Plus, ever since the COVID-19 pandemic, doctors have found that more and more people are developing ME/CFS after being infected with SARS-CoV-2.
In general, long COVID is the term used to describe when you have symptoms that don’t go away for at least three months after getting COVID. ME/CFS is just one possible outcome that falls under the general umbrella of long COVID. In fact, some studies suggest that half of people who have long COVID also meet the criteria for ME/CFS.
. There are some notable overlaps in symptoms, namely cognitive impairment, reduced blood flow to the brain, and fatigue They can be tricky to tease apart because we’re not entirely sure what’s going on in the body that leads to ME/CFS. One possibility is that an infectious virus can switch on a gene that messes with your immune and nervous systems.
ME/CFS is classified as a neurological disease. But that doesn’t mean it’s independent from the immune system. Some of the most well known neurological diseases, like multiple sclerosis, work this way too.
So there’s research that suggests broadly that several cells of the immune system work differently than they otherwise would in people with ME/CFS. Since increased inflammation is a hallmark of the disease, it’s worth further research to figure out exactly which immune cells could be problematic here. .
Ultimately, figuring out what led to your symptoms and getting a diagnosis can be literally exhausting. To get diagnosed with ME/CFS, you have to experience a variety of symptoms, from PEM to cognitive dysfunction, lightheadedness when you stand up, and extreme fatigue. Plus, you have to show a specific combination of these symptoms for at least six months before diagnosis.
And that diagnosis is just the beginning. The next step is learning how to manage your symptoms. One early management idea was to make patients slowly increase the amount of exercise that they did, until they could tolerate a healthy amount of exercise.
If that sounds like a bad plan to you, given what we know about ME/CFS, you’d be absolutely correct. While this type of increased exercise can be helpful for physical therapy after an injury, this only makes ME/CFS symptoms worse. You can’t run away from low blood oxygen levels.
Literally. Unfortunately, this idea was spread throughout the scientific community due to a controversial study called the PACE trial. The trial reported that patients with ME/CFS showed normal physical function after increasing their exercise.
But the researchers defined “normal” functioning as lower than the measurement that patients needed to be included in the study. . So they could get worse and still be counted as normal by the end of the study.
And even though patients and professionals alike have denounced the results of this study, that paper has still not been retracted. So since there are all sorts of less thought out conclusions about the condition floating around out there, here’s what we do we know about managing ME/CFS effectively. While there are no FDA-approved medications for the condition yet, people who live with it have found that some medications can help ease a few of their symptoms.
These can include painkillers or prescription medications to help with sleeping issues. . .
Outside of the pharmacy, patients can adjust their activity to match their energy levels from day to day. Keeping a daily activity log may be helpful for figuring out where any one person’s exertion limits and PEM triggers are. And once someone figures out their limits, they probably shouldn’t push past them.
The general idea is if you’re feeling good, do your thing. If you’re feeling tired, rest. In fact, people with ME/CFS can even plan for big, energy-expending events like giving a presentation by taking extra rest beforehand.
This way, they can minimize the chance of triggering a PEM flare as much as possible. With the boom of people getting diagnosed with ME/CFS since the pandemic, a lot more research needs to be done. But, as we learned from the PACE trial, those studies should keep actual patient experiences in mind.
If you don’t have ME/CFS, exercise is often still the best medicine. At least preventative medicine. But if exercising is causing damage to your body, trying to push yourself past your limits is not the answer.
Sometimes, no pain is a lot of gain.
