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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (say "my-AL-jik en-seh-fuh-loh-my-uh-LY-tus") is a disease that makes you feel so ill that you can't do your normal daily activities. Sleeping problems occur along with extreme fatigue that doesn't get better with rest. Any kind of activity often makes your symptoms worse. This is called post-exertional malaise. You may have other symptoms like problems with thinking. Another name for this condition is systemic exertion intolerance disease (SEID).
Doctors don't know what causes ME/CFS. It seems to follow after a flu-like illness like Epstein-Barr Virus (EBV). High stress may also lead to ME/CFS for some people. And changes in a person's immune system may also play a role. It's likely that a number of factors or triggers come together to cause ME/CFS.
Symptoms can vary with ME/CFS. If you have ME/CFS:
Depression is common with ME/CFS, and it can make your other symptoms worse.
To be diagnosed with ME/CFS, you must have all of these symptoms:footnote 1
You must also have one or more of these symptoms:
Doctors may also look for other causes of your symptoms. They may also do additional tests to confirm your diagnosis.
There is no treatment for ME/CFS itself, but many of its symptoms can be treated. A good relationship with your doctor is important. That's because the two of you will need to work together to find a combination of medicines and behaviour changes that will help you get better. Some trial and error may be needed, because no single combination of treatments works for everyone.
The key to living with ME/CFS is to learn how to pace your activities. This will allow you to be as active as possible without causing your symptoms to get worse. Avoid pushing yourself to do more on days you feel well. Take rest breaks during and between activities. You may also need to change your sleeping habits and try medicines to treat some of your symptoms.
When you have ME/CFS, you may not be able to do the things you would like to do. This may lead to feelings of frustration and anxiety. It can also lead to depression. Depression is not the same thing as ME/CFS. But it can make your ME/CFS symptoms worse.
Learning to cope with your symptoms and talking to others who have ME/CFS can help. So can working with a counsellor.
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Doctors don't know what causes ME/CFS. It seems to follow after a flu-like illness like Epstein-Barr Virus (EBV). But EBV doesn't cause all cases of ME/CFS. Other infections like parvovirus B19 and Ross River virus may also be linked to ME/CFS.
High stress may also lead to ME/CFS in some people. This could be a period of high physical or emotional stress or a major life event.
Changes in a person's immune system may also play a role.
It's likely that a number of factors come together to cause ME/CFS.
ME/CFS symptoms usually start suddenly. But for some people, they develop gradually over weeks or months. Symptoms can change in a day, and from day to day. And how severe the symptoms are can differ from person to person.
Symptoms can vary with ME/CFS. But there is a core set of symptoms that affect nearly everyone with ME/CFS. These core symptoms are:
ME/CFS may also cause the following symptoms. These may be just as common as the core symptoms. Different people with ME/CFS have different combinations of:
It's common for people with a chronic condition like ME/CFS to feel depressed. Some may grieve the loss of the active life they once had. If you feel depressed, talk with your doctor. Treatment for depression may prevent ME/CFS symptoms from getting worse.
ME/CFS may come upon you gradually or quite suddenly. Because the symptoms can be vague and can be caused by many things, you might not pay attention to the problem for several weeks or months. It is hard to say what is normal with ME/CFS. That's because the diagnosis often is not clear for some time.
In general, most people with ME/CFS:
But some people with ME/CFS may:
Most people with ME/CFS find that their symptoms greatly reduce their ability to do the things they want and need to do. But ME/CFS is different for everyone.
Most people are not able to work or go to school full-time. Some people are able to do some of their usual activities at work or school. They often have to cut down on social and recreational activities to save their energy. But ME/CFS affects other people more severely. They may have trouble getting out of bed or need help with basic activities such as dressing, eating, and bathing.
On days when they feel better, many people who have ME/CFS will try to "push" themselves to do as much as they can. But this often causes their symptoms to get worse the next day. Many call this a "crash." (It's also called post-exertional malaise.) But over time, this "push-crash" cycle can lead to worsening symptoms and more days recovering from doing too much.
ME/CFS can occur at any age. But it seems to be most common in people who are 25 to 45 years of age. It can happen to both men and women, but it seems to be more common in women.
ME/CFS is rare in children. It may occur in teens, especially after having mononucleosis.
It's important to talk to your doctor about any symptoms you may have.
Call your doctor if you have:
Watchful waiting refers to a period of time in which you are being watched by your doctor but are not getting treatment. A month or two of paying close attention to your sleep habits, trying to control stress, and eating a balanced diet will take care of most cases of fatigue not caused by ME/CFS or another medical problem. But if your fatigue has not improved after 1 to 2 months of self-care, or if fatigue won't go away and limits your usual activities, call your doctor.
If you have been diagnosed with ME/CFS, pay attention to any new symptoms and report them to your doctor. Although ME/CFS can cause a variety of symptoms, new symptoms could be caused by another illness or medical condition that may need to be evaluated and treated.
While there are doctors who specialize in the treatment of ME/CFS, it is always wise to start with your family doctor or general practitioner and learn as much as you can about the illness.
Depending on your symptoms, your family doctor may refer you to a specialist like a cardiologist, rheumatologist, neurologist, or pain management specialist.
If symptoms are severe or not responding to treatment, ask your doctor for a referral to a specialist who knows how to treat ME/CFS.
It's common to also have depression or anxiety along with a chronic condition like ME/CFS. So you may also be referred to a psychologist or psychiatrist for treatment.
Doctors use a specific list of symptoms to diagnose ME/CFS. Sometimes they may have you track your symptoms, activity, and rest in a diary. Since symptoms of ME/CFS can be similar to other conditions, doctors may do additional tests to confirm a diagnosis of ME/CFS. Or they may use a variety of tests to rule out other conditions.
Tests that may be done to confirm a diagnosis of ME/CFS may include:
Based on your symptoms, the doctor may do tests to look for other causes of your symptoms, including signs of a chronic infection, autoimmune disease, or low levels of hormones. These tests might include:
If there is a concern about your immune system, your doctor may refer you to another specialist like an immunologist.
Since there is not yet a cure for ME/CFS, the keys to living with ME/CFS are learning how to pace your activities and treating your symptoms.
Start by listing your worst symptoms—the ones that make it hardest to get through the day. With your doctor, focus first on treating those symptoms. Decide whether a specialist might be helpful for any of them.
The most common ME/CFS symptoms can also be the most treatable.
Symptoms worse after activity (post-exertional malaise)
Learning how to manage your activity can help you be as active as possible without causing your symptoms to get worse. This includes:
Good sleep habits can help improve the quality of your sleep. If you also try medicine for sleep, it's best to start on a low dose. Certain antidepressants help with sleep, mood, and chronic pain, so your doctor may suggest trying one.
Feeling dizzy or weak while sitting or standing (orthostatic intolerance)
Your doctor may have you wear pressure stockings, put your legs up while sitting, or increase your salt intake. Your doctor may also suggest medicines like fludrocortisone or midodrine.
Different kinds of pain can be treated in different ways. If one treatment doesn't work, you and your doctor can try another until you find what works best for you.
Depression, anxiety, and distress
Visit your doctor every few months to help track your symptoms and check for any need to change your treatment.
Get specialized care if you need it. For example:
Along with the treatment you get from your doctor, you might find that other treatments help too. Some people may try different diets or natural health products to help manage their symptoms. If you try a new diet or natural health product pay attention to how your body and symptoms respond to it. It may help to work closely with your doctor to figure out what works best for you.
Your mind and body are connected and affect each other. Physical illnesses can be made worse—or better—by your feelings and attitudes, and vice versa. Learn as much as you can about ME/CFS. Then work with your doctor to learn ways to cope with your symptoms. Get emotional support from your health professionals as well as from your family and friends.
Experts don't know if ME/CFS can be prevented or cured. But treatment can help people manage ME/CFS symptoms.
Home treatment is the most important part of treating ME/CFS. You can take steps to control and sometimes relieve your ME/CFS symptoms:
Try to be patient. Keep in mind that daily home treatment usually helps relieve or control ME/CFS symptoms.
Medicines do not cure ME/CFS. But they can help relieve your symptoms.
Over-the-counter medicines include:
Prescription medicines include:
For more information about treating some types of pain that may occur with ME/CFS, see:
Depression often becomes a part of ME/CFS and can make your symptoms worse. Like any medical illness, depression needs to be treated. If you have ME/CFS and feel depressed, talk to your doctor and get treatment.
The best treatment for your ME/CFS is what makes you feel better. Along with daily self-care and the treatment you get from your doctor, you might find that other treatments help too.
There are safe non-traditional treatments that can relieve pain and stress, ease muscle tension, help you feel better and healthier, and improve your outlook and quality of life.
Some popular complementary treatments include:
Some types of yoga may be very intense and cause your symptoms to worsen. Look for a gentle form of yoga. It may be best to start off with short sessions at home so that you can take breaks. Over time, you can slowly work up to longer yoga sessions.
Some people may try different diets or natural health products to help manage their symptoms. This is because they may notice new sensitivities to certain foods and chemicals. If you try a new diet or natural health product, pay attention to how your body and symptoms respond to it. It may help to work closely with your doctor to figure out what works best for you and your symptoms.
None of these complementary treatments have been proven effective in treating ME/CFS, but some people have reported feeling better after using them. If you have ME/CFS and are thinking about trying a complementary treatment, get the facts before you begin. Consider these questions with your doctor:
Avoid products that claim to have a "secret" ingredient or that claim to cure ME/CFS. Currently, there is no cure for ME/CFS. Any benefit reported as a result of using a product is most likely due to improved symptom management, chance, or, possibly, the illness running its course.
For more information, see the topic Complementary Medicine.
CitationsInstitute of Medicine (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Institute of Medicine. https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness. Accessed January 31, 2017.Other Works ConsultedAgency for Healthcare Research and Quality (2014). Diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (Evidence Report/Technology Assessment No. 219). Rockville, MD: Agency for Healthcare Research and Quality. https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-150505.pdf. Accessed February 23, 2016.Bleijenberg G, ven der Meer JWM (2015). Chronic fatigue syndrome. In DL Kasper et al., eds., Harrison's Principles of Internal Medicine, 19th ed., CD chap. 464e. New York: McGraw-Hill Education.Institute of Medicine (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Institute of Medicine. https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness. Accessed January 31, 2017.International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (2014). Chronic fatigue syndrome myalgic encephalomyelitis: A primer for clinical practitioners. Chicago, IL: IACFS/ME. http://www.iacfsme.org/portals/0/pdf/primerfinal3.pdf. Accessed February 23, 2016.
Adaptation Date: 10/28/2020
Adapted By: Alberta Health Services
Adaptation Reviewed By: Alberta Health Services
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