Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (The Basics)

What is chronic fatigue syndrome? — Chronic fatigue syndrome is a disorder that makes you feel very tired all of the time. It causes other symptoms, too. It is also known as myalgic encephalomyelitis/chronic fatigue syndrome ("ME/CFS"). Sometimes, the disorder is so bad, it makes it hard for you do your normal activities.

What are the symptoms of chronic fatigue syndrome? — The main symptom is feeling extremely tired most or all of the time. People who develop this disorder usually begin to feel tired suddenly, sometimes after a cold or infection. But it can happen gradually, too. With this kind of tiredness, rest does not help, and it's hard to do your normal daily activities.

Other common symptoms include:

●Feeling worse after physical or mental work – For example, you might feel much more tired after exercising, even gently. This can also happen after doing a complex task that involves a lot of thinking or concentrating.

●Trouble with memory or thinking clearly

●Sleep problems – You might wake up still feeling tired and not refreshed.

●Dizziness when you stand up

●Joint or muscle aches, nausea, or headaches

Chronic fatigue syndrome can be hard to deal with. Many people were healthy and active before their symptoms, and never worried about being sick. Then, all of sudden, they feel extremely tired and can't figure out what's wrong with them. This can be upsetting, especially since your doctor might not be able to find an obvious cause for your symptoms. You might even feel like other people think that your sickness is "all in your head." This might make you feel angry, helpless, or sad. However, it is important to know that experts agree that chronic fatigue syndrome is a real, physical illness. Your symptoms are not imaginary.

Should I see a doctor or nurse? — Yes. If you feel tired all of the time, see a doctor or nurse. Lots of health problems can cause tiredness. It's important to get checked out to find out what might be causing the problem.

Is there a test for chronic fatigue syndrome? — No. The doctors and nurses will ask about your symptoms. Often, they look for other causes of the symptoms first. If they find no other causes of the symptoms, they consider chronic fatigue syndrome.

To be diagnosed with chronic fatigue syndrome, you must feel tired most of the time for 6 months or longer, with no clear reason for your fatigue. In addition, you must have some of the other symptoms listed above.

How is chronic fatigue syndrome treated? — There is no cure. The goal of treatment is to help with your symptoms and improve your quality of life.

While there is no cure for the tiredness that comes with chronic fatigue syndrome, you might be able to treat some of your other symptoms. For example:

●if you have pain or trouble sleeping, your doctor might suggest things you can try or medicines you can take.

●If you are struggling with depression, tell your doctor or nurse. There are treatments that can help with this, too.

●Some people find that it helps to stay physically active. If you can exercise, even a little bit, it might help with your symptoms overall. But different people have different limits when it comes to exercise. So if you want to try this, work with your doctor to figure out what type and amount of activity to try.

●Some people find "cognitive behavioral therapy" ("CBT") helpful. This involves talking with a psychologist or counselor about what you think and do. While chronic fatigue syndrome is not a mental health disorder, and CBT will not cure it, CBT might help you cope better with fatigue. Some people find that CBT also helps with other symptoms, such as trouble sleeping. But not everyone agrees that CBT is appropriate for people with chronic fatigue syndrome.

Researchers have also studied whether different medicines, supplements, and special diets can help with chronic fatigue syndrome. So far, none of these approaches has been proven to work.

What will my life be like? — Living with chronic fatigue syndrome can be tough because it can be hard to do your normal activities. In addition, most people, even many doctors, don't really understand the condition. Plus, there is no test that can tell if you have it, and there aren't a lot of treatment options. But some people notice that their symptoms get better over time, or they get better at managing their symptoms.

If you have chronic fatigue syndrome, remember that you have a real medical condition. You are not imagining your symptoms. Scientists have not yet figured out how to explain or cure chronic fatigue syndrome, but they do know that it is real, and they are continuing to study it.

The most important thing is to find a doctor or nurse you trust. It can really help to have someone you feel comfortable talking to, who listens and understands you. That way, you can work together to figure out how best to deal with your symptoms.

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