The condition, which is also known as myalgic encephalomyelitis and chronic fatigue syndrome (CFS), is a debilitating illness whose cause remains unknown. It’s a relapsing-remitting disease that can impact individuals differently and affect their daily functioning, work and home life.
The most common symptoms are extreme tiredness, which often makes it difficult to think or concentrate, and memory problems, called brain fog. Many people with ME/CFS have trouble working or need to limit their social activities. Those who are most severely affected may be housebound or bedbound, needing around-the-clock care.
Fatigue is a symptom of many illnesses, so it can be hard to get a diagnosis. There’s no specific test for ME and many people with the condition have been misdiagnosed or told they’re imagining their symptoms. As a result, up to 90 percent of ME/CFS patients have not been properly diagnosed.
Currently, there’s no cure for ME/CFS, but doctors can help with managing the illness by prescribing medicines to treat symptoms like pain and sleep problems. They can also teach people how to conserve their energy and take it easy in order to avoid overtaxing themselves.
Research continues to explore what causes ME/CFS, including whether it’s an underlying health problem or a psychiatric disorder. Genetics, infections, and immune system problems may be involved. Researchers are currently trying to find out what’s behind ME/CFS by examining samples of thousands of people’s DNA as part of the DecodeME project.
ME/CFS is sometimes triggered by an infection, such as the coronavirus pandemic or flu. But it’s a relapsing-remitting illness, and the effects can last for months.
As such, it’s important to be able to recognize symptoms and seek treatment as soon as possible.
The CDC recommends that patients see their doctor or nurse if they’re experiencing ME/CFS symptoms. They’ll ask about the person’s medical history and their symptoms. Then they’ll recommend treatment based on what the person reports.
In the US, a patient’s doctor may refer them to an ME/CFS specialist. Specialists can provide ongoing treatment and support and coordinate other care providers. They can also help educate and train other healthcare professionals about the condition.
Many people with ME/CFS have one or more additional diseases (comorbidities). These include fibromyalgia, irritable bowel syndrome, gastroparesis, postural orthostatic tachycardia syndrome (POTS, increased heart rate when standing) and Ehler’s Danlos Syndrome (hyperextensibility disorder). Some also experience secondary depression or mast cell disorders. These comorbidities can make ME/CFS worse. That’s why it’s important for all healthcare providers to know about the conditions and how to spot them.