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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease that causes you to feel so ill that you can't do your normal activities. Sleeping problems occur along with extreme fatigue that doesn't get better with rest. Any kind of activity often makes your symptoms worse. You may have other symptoms like problems with thinking.
Doctors don't know what causes ME/CFS. It seems to follow after a flu-like illness. 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 use a variety of tests to confirm a diagnosis or to rule out other conditions.
There isn't a cure yet for ME/CFS. So the keys to living with ME/CFS are learning how to pace your activities and treating your symptoms.
There are some things you can do to treat the most common symptoms.
Health Tools help you make wise health decisions or take action to improve your health.
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 for 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 slowly 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.
The core symptoms are:
Fatigue can be constant, or it can come and go. It's not relieved by rest. This fatigue also is so severe that it interferes with your work, play, and social activities.
You may feel ill or weak or that your ME/CFS symptoms are worse after physical or mental activity. Even daily activities like showering, cooking, and reading can trigger symptoms. Often there is a delay of 24 hours before it starts. It can take days, weeks, or more to feel better.
You may have trouble sleeping. Or you may wake up feeling tired or not rested.
ME/CFS may also cause other 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 all of a sudden. 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. Symptoms are worse for some people than for others.
It's important to talk to your doctor about any symptoms you may have.
Call your doctor if you have:
Watchful waiting is a wait-and-see approach. 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 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 physiatrist, 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.
You must also have one or more of these symptoms:
Other conditions can cause symptoms similar to ME/CFS, so your doctor may do more tests to confirm the diagnosis. These 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:
This gives important information about the kinds and numbers of cells in your blood.
This test measures how quickly red blood cells (erythrocytes) settle in a test tube. This tells whether or not you have certain types of inflammation.
It's used to find problems that affect the thyroid gland.
This is a blood test that provides information about your general state of health.
This is a urine test that can provide information about your overall health and clues to many conditions.
If there is a concern about your immune system, your doctor may refer you to another specialist like an immunologist.
There isn't a cure yet for ME/CFS. So the keys to living with ME/CFS are learning how to pace your activities and treating your symptoms. Find a primary doctor who understands ME/CFS, knows how to treat it, and helps you feel supported.
A good relationship with your doctor is important. That's because the two of you will need to work together to find a mix of medicines and behaviour changes that will help you get better. Some trial and error may be needed. That's because no single combination of treatments works for everyone.
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.
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.
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.
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.
An ME/CFS support group can be a good source of information and tips for managing your illness. It also gives you a chance to share your frustrations and problems with others who have ME/CFS.
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:
Sign "release of information" forms so that your doctors can work together as a team.
Here are some steps you can take to control and sometimes relieve your ME/CFS symptoms.
Medicines don't cure ME/CFS. But they can help relieve your symptoms.
You might take over-the-counter pain relievers and anti-inflammatory drugs. They include acetaminophen (such as Tylenol), ibuprofen (such as Advil or Motrin), and naproxen (such as Aleve). They sometimes relieve joint and muscle pain, headaches, and fevers. Be safe with medicines. Read and follow all instructions on the label. Talk to your doctor if your pain isn't helped by OTC medicine. If you have a migraine, it is important not to take over-the-counter pain medications on more than 10-15 days per month, because it can make your migraine worse.
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, and help you feel better and healthier.
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.
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.
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.
Adaptation Date: 1/24/2022
Adapted By: Alberta Health Services
Adaptation Reviewed By: Alberta Health Services
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