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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 condition that makes you feel so tired that you can't do all of your normal, daily activities. There are other symptoms too, but being very tired is the main one. Some people have severe fatigue and other symptoms for many years. Another name for this condition is systemic exertion intolerance disease.
ME/CFS is not well understood. Most experts now believe that it is a separate illness with its own set of symptoms. But some doctors don't believe this.
There are no tests for ME/CFS. Because of this, many people have trouble accepting their disease or getting their friends and family to do so. Having people who believe your diagnosis and support you is very important. Having a doctor you can trust is critical.
Your tiredness is real. It's not "in your head." It is your body's reaction to a mix of factors.
Doctors don't know what causes ME/CFS. Sometimes it begins after a viral infection, but there is no proof of any connection. It's likely that a number of factors or triggers come together to cause ME/CFS.
Extreme tiredness, or fatigue, is the main symptom. If you have ME/CFS:
Depression is common with ME/CFS, and it can make your other symptoms worse.
There are no tests for ME/CFS. Doctors may also look for other causes of your fatigue. Many other health problems can cause fatigue. Most people with fatigue have something other than ME/CFS.
Here is one set of criteria (rules) that doctors use to diagnose ME/CFS:footnote 1
To be diagnosed with ME/CFS, you must have all of these symptoms:
You must also have one or more of these symptoms:
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.
Home treatment is very important. You may need to change your daily schedule, learn better sleep habits, and use regular gentle movement or exercise to fight fatigue. Even at times when you have more energy, keep a low-key pace throughout each day. Rest often.
Living with ME/CFS can be as much a mental health challenge as it is a physical one. Take steps to avoid getting caught in a cycle of frustration, anger, and depression. 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. For many people, ME/CFS symptoms start after a viral illness. In some cases, ME/CFS seems to follow a major physical or emotional trauma or an exposure to toxins. But there is no single known cause of ME/CFS.
Other theories point to the immune system, glands and hormones, and family history. But again, there's not enough evidence to prove a solid connection.
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. They tend to stop (remission) and then start again (relapse).
There is broad range of ME/CFS symptoms. But there is a core set of symptoms that affect nearly everyone with ME/CFS. These core symptoms are:
A person with ME/CFS also has two or more of these symptoms:
ME/CFS may also cause the following symptoms. Different people with ME/CFS have different combinations of:
Having depression along with CFS is common and can make CFS symptoms worse.
ME/CFS causes symptoms that are the same as many other diseases, especially early on. For this reason, it can be diagnosed only after a thorough evaluation has ruled out other conditions with similar symptoms.
In some cases, ME/CFS develops after a flu-like illness such as mononucleosis (mono) or after a period of unusual stress. But it may also occur without warning, even if you have not been sick.
The fatigue may come upon you gradually or quite suddenly. Because fatigue 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.
Some people find the fatigue, pain, and thinking problems caused by ME/CFS greatly hamper their lives. But other people are not nearly as affected.
People who have ME/CFS are generally 25 to 45 years of age. Women are more likely to have ME/CFS.
ME/CFS is rare in children. It may occur in teenagers, especially young teenage girls. Unlike adults, teenagers are more likely to develop ME/CFS after having a flu-like illness.
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, getting regular moderate exercise, 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.
Your family doctor or general practitioner can evaluate fatigue and other symptoms.
There are doctors who specialize in the treatment of ME/CFS. Get a recommendation from your family doctor or a local ME/CFS support group before you make an appointment with a specialist. It is always wise to start with your family doctor. You may also be referred to a physiatrist, psychologist, or psychiatrist.
ME/CFS is hard to diagnose. It is common to have normal test results when you have ME/CFS. Fatigue is an extremely common problem, and it can have many other causes. ME/CFS can be diagnosed only by ruling out other conditions.
First, your doctor will ask you about past health and do a physical examination. Experts have come up with a specific list of symptoms to decide whether a person has ME/CFS. Doctors use a variety of tests to rule out other conditions. These tests usually include:
These are routine lab tests. Other tests may be done if your symptoms, history, and physical examination suggest other possible problems. These other tests may include:
Some doctors may order tests that check your immune system. These can be expensive and generally are done only in research settings. Also, it's hard to know what the findings of these tests mean. That's because so little is known about the immune system's connection to ME/CFS.
Since there is not yet a cure for ME/CFS, the key to living with ME/CFS is 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.
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.
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.
Do all you can to take charge of your fatigue level.
Depression, anxiety, and distress
Living with ME/CFS can be as much a mental health challenge as it is a physical one. It's easy to get caught in a cycle of frustration, anger, and depression.
You can expect your symptoms to come and go. For some people, certain things trigger long periods of worse symptoms. 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:
There are many unproven remedies, such as special diets or mineral supplements, that some people recommend for treating ME/CFS. There is no evidence that any of these are effective.
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.
ME/CFS can't be prevented or cured. But treatment can help control or reduce 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. Your doctor may suggest cognitive-behavioural therapy to help you with your home treatment. But this type of therapy doesn't work for everyone. More research is needed to better understand how well this treatment works for ME/CFS.
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:
Some research has studied the use of corticosteroids (such as hydrocortisone and fludrocortisone) to treat ME/CFS. Studies have shown that these medicines don't work very well to treat ME/CFS. And the side effects can be serious. Unless corticosteroids can be shown to have a greater benefit for people with CFS over a longer period of time, the side effects associated with long-term corticosteroid therapy outweigh the benefits from their use in most cases.footnote 2
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:
There are many unproven treatments for ME/CFS. Some of the more popular ones include:
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.Cleare A, et al. (2015). Chronic fatigue syndrome. BMJ Clinical Evidence, published online September 28, 2015. http://clinicalevidence.bmj.com/x/pdf/clinical-evidence/en-gb/systematic-review/1101.pdf. Accessed February 23, 2016.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.
Current as ofMarch 28, 2019
Author: Healthwise StaffMedical Review: E. Gregory Thompson MD - Internal MedicineAdam Husney MD - Family Medicine
Current as of: March 28, 2019
Author: Healthwise Staff
Medical Review:E. Gregory Thompson MD - Internal Medicine & Adam Husney MD - Family Medicine
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