What is Myalgic Encephalomyelitis?

Image: Jashina/ Pixabay

Image: Jashina/ Pixabay

If you’re like most people, you might have never heard of myalgic encephalomyelitis (or ME). Although, if you suffer from the condition, you know exactly how devastating it can be. ME is poorly understood, even by medical science. And that lack of understanding has made it difficult for sufferers to get the recognition they need.

So, if you’ve just been diagnosed with ME, or just want to learn more about the condition, follow along as we talk about what ME is and how it might be treated.

What Is Myalgic Encephalomyelitis?

The term myalgic encephalomyelitis is often used interchangeably with chronic fatigue syndrome, which should give some idea of the usual symptoms. But the condition can be unpredictable and affects people who suffer from it in different ways.

The most common symptom of ME is chronic fatigue. But unlike normal fatigue, people with ME get tired regardless of how much sleep they’ve gotten or their level of physical activity.

There’s no test that a doctor can run to diagnose the condition, so they depend on asking some questions about the patient’s symptoms and medical history. Generally, a diagnosis of ME relies on a few things.

First, the patient suffers from constant fatigue. Second, the fatigue is not a life-long condition. Instead, most people with ME can remember a time (which varies from person to person) when they suddenly began feeling tired, and the symptoms have lasted since that point. Third, there is no other explanation for the fatigue, like another medical condition or an increased level of physical activity. Finally, the fatigue isn’t improved by rest.

This fatigue is usually more or less constant, but normal daily tasks can make it much worse. Even something as simple as taking a shower can leave someone with ME unable to get out of bed because of extreme fatigue.

While fatigue is the central symptom associated with ME, it isn’t the only one. Many people with the condition struggle with constant pain in addition to fatigue. Usually, this pain occurs in the muscles and joints. But headaches, stomach pain, and frequent throat pain are also common.

Many people with the condition also notice that they have a hard time focusing on daily tasks or issues with short-term memory. These symptoms are usually described as a kind of mental “fog” or haze.

We don’t understand what causes ME or really even understand why the disease causes the symptoms it does. The truth is that the while the condition affects around 2 million Americans, it doesn’t receive the kind of attention from the medical community that it needs. Most medical schools in the US don’t train their students to diagnose the condition.

Combined with the lack of funding for the condition, research into the possible causes has been slow. Genetics probably plays some role, since many people with the condition have family members who suffer from ME. Some researchers have also suggested that changes in the immune system or body chemistry might contribute to the condition, but at the moment no one is sure.

Treating a condition doctors don’t understand is obviously difficult, but there are a few things that you can do to help manage it.

How Is It Treated?

ME doesn’t produce visible symptoms, which leads many people to assume that people with ME are “faking” it or suffering from some mental illness. Doctors are people too, of course, and aren’t immune to these kinds of attitudes.

If you think you have ME, it’s a good idea to seek out a doctor who specializes in ME or in similar conditions. Not only will they be more sympathetic, they will likely have a better idea how to diagnose and treat the condition.

Because there is no cure for ME, treatment is based on managing symptoms. Typically, pain is managed with medications, but many patients can benefit from seeing a doctor who specializes in chronic pain and can provide counseling in other forms of pain management.

When it comes to managing fatigue, sleep is still important. And making adjustments to your schedule or habits can help you get the best possible rest that you can with ME. Other changes like managing your diet and physical activity can also make a big difference.

It’s important to remember that ME is something that you shouldn’t try to manage on your own. Seeing a good doctor or counselor is vital. Managing ME means making huge adjustments to your life, which is difficult to do on your own.

Finding the right team to help you on your treatment journey is one of the most important things to do when it comes to treating ME. The American Medical Association offers an online tool to help you find doctors who specialize in ME in your area. You can find it here.

So, do you suffer from ME? Have you found any effective ways to manage the condition? Let us know in the comments.

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