Myalgic encephalomyelitis, formerly known as chronic fatigue syndrome and now often referred to as ME/CFS, was recently redefined and renamed to more accurately reflect the brain inflammation and multisystem symptoms of the disease.
With the renaming came new guidelines from the National Academy of Medicine to help primary and specialty care providers more readily diagnose and manage a condition that has traditionally been difficult to diagnose and manage.
Symptoms leading to a diagnosis of ME/CFS now include: an impairment in activities of daily living that persist for more than six months; an onset of unexplained profound fatigue that isn’t helped by rest; a general feeling of discomfort after exertion; unrefreshing sleep; and either cognitive impairment (memory or learning problems) or symptoms that occur only when standing. See the Diagnosis section for more details.
ME/CFS affects women at three to four times the rate that it affects men, and the illness is diagnosed more often in people in their 40s and 50s. It can affect any sex, race or socioeconomic class. Research shows that it is at least as common in Hispanics and African Americans as it is in Caucasians. And although ME/CFS is less common in children than in adults, children can develop the illness, particularly during the teen years. It can be as disabling as multiple sclerosis and chronic obstructive pulmonary disease.
ME/CFS is estimated to affect between 826,000 and 2.5 million people in the United States, according to the Centers for Disease Control and Prevention. ME/CFS is sometimes seen in members of the same family, suggesting there may be a genetic link; more research is needed to prove this link.
ME/CFS does not appear to be a new illness. Outbreaks of similar disorders have been described in medical literature since the 1930s. Furthermore, case reports of comparable illnesses date back several centuries.
Interest in ME/CFS was renewed in the mid-1980s after several studies found slightly higher levels of antibodies to the Epstein-Barr virus (EBV) in people with ME/CFS-like symptoms than in healthy individuals. Most of these people had experienced an episode of infectious mononucleosis (sometimes called mono or the “kissing disease”) a few years before they began to experience the chronic, incapacitating symptoms of ME/CFS. As a result, for a time, the ME/CFS illness became popularly termed “chronic EBV.”
Further investigation revealed that elevated EBV antibodies were not indicative of ME/CFS, since healthy people have EBV antibodies and some people with ME/CFS don’t have elevated levels of EBV antibodies.
ME/CFS may begin suddenly or come on gradually. The sudden onset frequently follows a respiratory, gastrointestinal or other acute infection, including mononucleosis. Other cases develop after emotional or physical traumas such as serious accidents, bereavement or surgery.
There are no indications that ME/CFS is contagious or that it can be transmitted through intimate or casual contact. Research continues to determine the safety of blood donation by people with ME/CFS. The AABB, an organization representing blood banking centers in the United States and around the world, has recommended the indefinite deferral of potential blood donors with a past or current history of ME/CFS. This recommendation has been adopted by the American Red Cross and America’s Blood Centers, the two largest blood collectors in the United States.
Although ME/CFS can persist for many years, long-term studies indicate that ME/CFS generally is not a progressive illness. Symptoms are usually most severe in the first year or two. Thereafter, the symptoms typically stabilize, then persist chronically, wax and wane or improve. For some people with ME/CFS, however, symptoms can get worse over time.
It appears that while the majority of people with ME/CFS partially recover, only a few fully recover, while others experience a cycle of recovery and relapse. There’s no way to predict which category you might fall into. There is some evidence that the sooner a person is diagnosed with ME/CFS and symptoms are managed and treated, the better the chances of improvement, which illustrates the importance of early diagnosis and treatment.
ME/CFS is diagnosed using the new diagnostic criteria, together with a good clinical evaluation that makes sure other medical and psychiatric illnesses cannot explain the symptoms. Decreased physical function that is accompanied by profound fatigue and post-exertional malaise are hallmark symptoms of ME/CFS. It is important to diagnose ME/CFS early so that proper treatment and management can be started.
A diagnosis of ME/ME/CFS requires the following three symptoms:
- A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities, that persists for more than six months and is accompanied by fatigue, which is often profound; is of new or definite onset (not lifelong); is not the result of ongoing excessive exertion; and is not substantially alleviated by rest
- Post-exertional malaise
- Unrefreshing sleep
At least one of the two following manifestations is also required:
- cognitive impairment
- orthostatic intolerance
It is also important to diagnose conditions that have similar symptoms so these can be treated. Diseases with symptoms similar to ME/CFS include:
- sleep apnea
- alcohol or substance abuse
- severe obesity
- multiple sclerosis
- anorexia nervosa
- bulimia nervosa
- bipolar disorder
Some diseases eliminate a diagnosis of ME/CFS, such as multiple sclerosis, lupus or a severe psychiatric disorder such as schizophrenia. It would not provide any benefits in these cases to have a second diagnosis.
Multiple subjective symptoms are also reported, and although these are not included in the current diagnostic criteria, they are reported with relative frequency. These include:
- irritable bowel syndrome and other gastrointestinal complaints
- allergy-like symptoms
- skin rashes
- visual disturbances
- numbness and tingling in arms and legs
- sensitivities to various chemicals
- dry eyes
- night sweats
- alcohol and medication intolerances
People with ME/CFS also report mild to moderate symptoms of anxiety or depression. However, many people with ME/CFS don’t have depression or any other psychiatric illness. Depression may be a secondary effect of ME/CFS, not necessarily a primary condition, as people attempt to cope with the changes in lifestyle that living with a chronic illness dictates.
Whether anxiety or depression occurs before or during the illness is not the significant factor; getting help for these distressing conditions is what is essential.
Allergies also tend to be more common in people who have ME/CFS than in the general population. Many people with ME/CFS have a history of allergies years before the onset of the syndrome. Sometimes they report a worsening of allergic symptoms or the onset of new allergies after becoming ill with ME/CFS. Because allergies are so common in people with ME/CFS, it is important to identify symptoms caused by allergies so they can be treated independently.
Your health care professional should take a thorough medical history and conduct extensive physical and mental status examinations, including laboratory tests.
A variety of interventions have been shown to help with myalgic encephalomyelitis (formerly known as chronic fatigue syndrome and now often referred to as ME/CFS).
Treatment is based on individual symptoms. If you’re diagnosed with ME/CFS, you’ll probably manage the condition with the following:
- Symptom-based treatment (e.g., pain medications, sleep medications).
- Education about the disease.
- Regular follow-up visits to rule out alternative diagnoses and assess response to therapy.
- Lifestyle changes. While lifestyle changes cannot cure the symptoms of ME/CFS, they can make life more manageable and enjoyable. Increased rest, the use of stress reduction and management techniques, energy conservation techniques, dietary restrictions, nutritional supplementation and exercise based on personal abilities may be recommended by your health care professional.
- Staying in condition. It is important to get regular physical activity, because not being in good physical condition may complicate your ME/CFS. Certain types of activity such as yoga, stretching and qigong can provide symptom relief, in addition to helping maintain your physical condition. Working with a physical therapist may also be useful. Know your limits so you don’t make your symptoms worse.
- Cognitive behavior therapy. This therapy helps people with ME/CFS identify negative beliefs and behaviors that may be getting in the way of their recovery. With the help of a mental health provider, cognitive behavior therapy helps you replace negative thoughts with positive, healthy ones.
- Medication. Certain over-the-counter or prescription medications may help you manage your symptoms. Specifically:
- For aches and pains, over-the-counter medicines and prescription treatments including nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Motrin), naproxen (Aleve), acetaminophen (Tylenol) and the prescription drug piroxicam (Feldene) may help. Deep massage, stretching, an activity program that has been designed with the help of a physical therapist or chiropractic treatment may also help minimize these symptoms.
- For sleep problems that accompany ME/CFS, your health care professional may first suggest you change your sleep habits and stick to a regular bedtime, skip daytime naps and avoid substances like alcohol and caffeine. If this doesn’t help, he or she may prescribe a short-term dose of sleep medication.
- For depression, antidepressants are often used. It often takes several weeks to see benefits with antidepressants or to identify side effects, so be patient and work with your health care professional to find the medication that is best for you.
- For allergy symptoms, such as a runny nose or itchy eyes, your health care professional may recommend a non-drowsy antihistamine.
You may also benefit from keeping an energy/activity diary. Keep a log for several weeks, noting the times when you feel the most fatigued and what activities you performed during the day. This can help you identify patterns in your illness and factors that contribute to your fatigue or other symptoms, such as headaches. There are several apps available now that you can use on your computer or smartphone to help you track and monitor your ME/CFS. Many people find that wearable devices are useful for tracking.
Also schedule rest periods and adjust your schedule to fit your energy patterns. Making time to relax and meditate during certain times of the day may be helpful, as will avoiding situations you know to be physically or psychologically stressful.
Work with your health care professional to develop a highly individualized activity plan based on your personal capabilities. Some ME/CFS sufferers experience profound fatigue even after very minimal exercise, so start off slowly and build up gradually. Many people find gentle exercise such as stretching, walking, swimming, biking, water aerobics and relaxation exercises to be helpful in easing their symptoms. A physical therapist may help you put together an exercise program you can do at home.
Diet may also be an effective way to take control of your illness. Research suggests that ME/CFS patients benefit from a basic healthy diet low in animal fat and high in fiber with plenty of fresh fruits and vegetables. Talk with a nutritionist about your diet and ways that foods can help increase your energy levels and relieve symptoms. If you lack the stamina to prepare well-balanced meals, let your health care provider know. Services may be available to assist with obtaining meals. A visit with a dietitian may be needed if you’ve lost or gained weight or been unable to eat a balanced diet.
You should also avoid certain triggers that aggravate ME/CFS symptoms, such as a chemical, pesticide, household cleaning product or other potential environmental toxins. To identify your triggers, remove all suspected toxins from your environment, then reintroduce them one by one to pinpoint what may be aggravating your symptoms.
Despite a decade of research into the origins of ME/CFS we still don’t know what causes this debilitating disease. Neither are there known steps you can take to prevent ME/CFS. However, research into the cause, control and prevention of ME/CFS is being conducted.
Facts to Know
- Myalgic encephalomyelitis, formerly known as chronic fatigue syndrome and now often referred to as ME/CFS, ME/CFS can affect all races, sexes and socioeconomic groups. It affects women at three to four times the rate that it affects men. The condition is most common in people in their 40s and 50s.
- Studies find that adolescents are less likely to develop the condition than adults. Cases in children under 12 are even less common.
- ME/CFS does not appear to be a new illness. Outbreaks of similar disorders have been described in medical literature since the 1930s.
- This illness was once called “chronic fatigue syndrome” because of the long-term persistent fatigue. However, the word fatigue is highly misleading, because it is one symptom among many and can create misunderstanding and trivialization of the disease.
- There is no evidence to indicate that ME/CFS is contagious, but organizations like the American Red Cross recommend indefinite deferral of potential blood donors with a past or current history of ME/CFS.
- The Centers for Disease Control and Prevention reports that between 836,000 and 2.5 million people in the United States have ME/CFS. ME/CFS can begin suddenly or gradually. The sudden onset sometimes follows a respiratory, gastrointestinal or other acute infection, including mononucleosis. Other cases develop after emotional or physical traumas such as a serious accident, bereavement or surgery. Sometimes there is no obvious trigger for ME/CFS.
- The severity of ME/CFS symptoms varies with each individual. Besides debilitating fatigue that does not go away even with rest, several common symptoms of ME/CFS include:
- Unrefreshing sleep
- Impaired short-term memory or concentration
- Post-exertional malaise occurring within 12 to 24 hours of exertion and lasting 24 hours or more
- Muscle and joint pain
- More intense or changed patterns of headaches
- Tender lymph nodes in neck or underarms
- Recurrent sore throat
- There is limited long-term data on the ultimate progression or regression of ME/CFS. Symptoms can wax and wane, becoming more severe or improving over time.
- No specific blood tests or therapies for ME/CFS exist. If your health care professional has diagnosed you with ME/CFS, treatment will focus on relieving symptoms, improving function and restoring quality of life.
- 10. There is no known cause of ME/CFS. Viruses have been linked to the condition, including Epstein-Barr virus; human herpes virus type 6 (HHV-6); enteroviruses; and Ross River virus.. Other infections, such as candida albicans, a fungus that causes yeast infections; bornaviruses, which cause an infectious neurological syndrome called borna disease; mycoplasma, a cause of atypical pneumonia; and coxiella burnetti, the agent that causes Q fever, have also been implicated. There is evidence of immune system dysfunction, low blood pressure, endocrine abnormalities, nutritional deficiencies and problems with the nervous system in ME/CFS, but it is not known if these are cause or effect. No cause has yet been definitively connected to ME/CFS, but research is ongoing.
Questions to Ask
Review the following Questions to Ask about chronic fatigue syndrome (CFS) so you’re prepared to discuss this important health issue with your health care professional.
- Do you have experience in diagnosing ME/CFS? Are you familiar with the 2015 clinicians’ report on ME/CFS from the Institute of Medicine that redefines the diagnostic criteria for this disease?
- What tests will you conduct to rule out other causes for my symptoms?
- Does my medical history support a diagnosis of ME/CFS? Or does it suggest some other cause for my illness, such as hypothyroidism?
- Do you treat other patients with ME/CFS?
- What treatments do you recommend for my symptoms?
- When should I notify you of changes in my condition, such as the recurrence or appearance of new symptoms?
- What strategies can I use to cope with this illness? How can I help my family, friends and coworkers understand my illness?
- How will you follow my illness?
- Do you recommend an exercise plan?
- Where can I find more information on ME/CFS? Is there any new research available regarding the causes or treatment of ME/CFS?
- Are there any ME/CFS support groups in my community?
If there is no cure for myalgic encephalomyelitis (ME/CFS), what can my health care professional do to help me?
Your health care professional will base your treatment on the symptoms you experience as a result of the illness. It is important to tell your health care professional about any symptoms you experience, since many are also symptoms of other diseases that can be treated. Also remember that new illnesses or conditions may present at any time and are not necessarily related to ME/CFS. These need to be reported and the causes identified. Your health care professional can also recommend support groups and other therapies to help you cope with ME/CFS.
Why do my symptoms seem to come and go?
The symptoms are usually most severe in the first year or two. Thereafter, symptoms typically stabilize and then can persist chronically, wax and wane, or improve. Currently, an individual’s course of illness cannot be predicted.
How can my health care professional diagnose ME/CFS if there is no known cause and no diagnostic tests available?
Your health care professional will determine if you have ME/CFS based on your symptoms and medical history and through the use of medical tests and examinations that will rule out other probable causes for your symptoms. You may be referred to a specialist.
Will I ever be cured?
There is no cure for ME/CFS at this time. In fact, there is no treatment for ME/CFS, only treatments for the symptoms of ME/CFS, such as headaches, sore throats or sleep problems. Some patients partially recover, a few may fully recover and others may find their symptoms get worse. Others experience periodic relapses. Since little is known about the cause and progression of ME/CFS, the course of your individual illness cannot be predicted. It is important to realize that people with ME/CFS can be helped with appropriate care from a health care provider who understands ME/CFS.
Is ME/CFS contagious?
There is no evidence that it can be transmitted through intimate or casual contact or that people with ME/CFS need to be isolated in any way.
What are the symptoms of ME/CFS?
Besides debilitating fatigue that is not alleviated by rest, common symptoms of ME/CFS include: more intense or changed patterns of headaches, reduced short-term memory or concentration, recurrent sore throats, tender lymph nodes, muscle discomfort or pain, joint pain without joint swelling or redness, sleep that is unsatisfying and fails to refresh and post-exertional malaise within 12 to 24 hours of exertion and lasting 24 hours or more. You may not experience all of these symptoms. The severity of symptoms varies with each individual.
Can ME/CFS be confused with other illnesses or diseases?
Yes. That’s why it’s very important you see a health care professional if you suspect you have ME/CFS. Even if you’ve been diagnosed with ME/CFS, talk to your health care professional about any new symptoms or changes in the course of your illness so other conditions can be ruled out.
Besides medical treatments for my symptoms, what can I do to minimize the effects of ME/CFS?
Often, health care professionals will suggest lifestyle changes, such as increased rest, the use of stress reduction and management techniques, dietary changes, nutritional supplementation and an individualized activity plan that can help minimize deconditioning. Supportive therapy, such as counseling, can also help to identify and develop effective coping strategies.
Organizations and Support
For information and support on coping with Chronic Fatigue Syndrome, please see the recommended organizations, books and Spanish-language resources listed below.
American Occupational Therapy Association
Address: 4720 Montgomery Lane
P.O. Box 31220
Bethesda, MD 20824-1220
Solve ME/CFS initiative
Address: PO Box 220398
Charlotte, NC 28222
International Association for Chronic Fatigue Syndrome
Address: 27 N. Wacker Drive, Suite 416
Chicago, IL 60606
Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia & Environmental Illness
by Burton Goldberg and Editors of Alternative Medicine Digest
Bodylearning: How The Mind Learns From The Body: A Practical Approach
by Ginny Whitelaw
The Doctor’s Guide To Chronic Fatigue Syndrome: Understanding, Treating, And Living With Cfids
by David S. Bell
Facing and Fighting Fatigue: A Practical Approach
by Benjamin H. Natelson
Medline Plus: Chronic Fatigue Syndrome
Address: Customer Service
US National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894