Chronic fatigue syndrome (CFS) is an illness characterized by prolonged, debilitating fatigue that does not improve with rest and worsens with physical or mental activity. It is also characterized by multiple nonspecific symptoms such as headaches, recurrent sore throats, muscle and joint pains, and memory and concentration difficulties.
CFS can be hard to diagnose, and its cause or causes are unknown. Even its name can be confusing: CFS is also known as myalgic encephalomyelitis (ME or ME/CFS or CFS/ME), as well as chronic fatigue and immune dysfunction syndrome (CFIDS).
Profound fatigue, the hallmark of the disorder, can come on suddenly or gradually and persists or recurs throughout the period of illness. Unlike the short-term disability of an illness such as the flu, by definition CFS symptoms must have lasted for at least six months. They often linger for years.
CFS affects women at about 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 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.
The prevalence of CFS is difficult to measure because the illness can be difficult to diagnose, but, in general, it is estimated that at least 1 million people in the United States have CFS, according to the CDC. 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.
CFS does not appear to be a new illness, although it only recently was assigned a name. Relatively small 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 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 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 CFS. As a result, for a time, the CFS-like illness became popularly termed “chronic EBV.”
Further investigation revealed that elevated EBV antibodies were not indicative of CFS, since healthy people have EBV antibodies and some people with CFS don’t have elevated levels of EBV antibodies.
The international group organized by the CDC named the illness chronic fatigue syndrome because the name reflects the most common symptom: long-term, persistent fatigue. It is important to note, however, that the word “fatigue” may be extremely misleading. Fatigue is but one symptom among many that make up this illness, and it doesn’t reflect the significance of other disabling symptoms. The word also adds to generalized misunderstanding and trivialization of the illness. Use of the name
ME/CFS is becoming more common.
There are no indications that 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 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 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.
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.
Although CFS can persist for many years, long-term studies indicate that 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 CFS, however, symptoms can get worse over time.
It appears that while the majority of people with 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 CFS and symptoms are managed and treated, the better the chances of improvement, which illustrates the importance of early diagnosis and treatment.
Symptoms of CFS/ME
The main symptom of CFS/ME is feeling extremely tired and generally unwell.
In addition, people with CFS/ME may have other symptoms, including:
- sleep problems
- muscle or joint pain
- a sore throat or sore glands that aren’t swollen
- problems thinking, remembering or concentrating
- flu-like symptoms
- feeling dizzy or sick
- fast or irregular heartbeats (heart palpitations)
Most people find overexercising makes their symptoms worse.
The severity of symptoms can vary from day to day, or even within a day.
The symptoms of CFS/ME are similar to the symptoms of some other illnesses, so it’s important to see your GP to get a correct diagnosis.
Chronic fatigue syndrome (CFS) is diagnosed by excluding known medical and psychiatric illnesses that also exhibit fatigue and similar symptoms. It is important to diagnose these conditions because treatments may be available. Diseases that also have fatigue include:
- sleep apnea
- alcohol or substance abuse
- severe obesity
- multiple sclerosis
- anorexia nervosa
- bulimia nervosa
- bipolar disorder
Thus, the diagnosis of CFS is one of exclusion—excluding other possible causes of the symptoms. Some diseases eliminate a diagnosis of 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.
The current diagnostic criteria for CFS specify unexplained, persistent fatigue that’s not due to ongoing exertion, isn’t substantially relieved by rest, started recently and leads to significant reduction in previous activity levels. They also require the presence of at least four of the following symptoms:
- sleep problems
- impairment in short-term memory or concentration
- post-exertional malaise occurring within 12 to 24 hours of exertion and lasting 24 hours or more
- joint pain without joint swelling or redness
- muscle discomfort or pain
- headaches of a new type or severity
- recurrent sore throat
- tender lymph nodes in the neck and underarms
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
Some CFS patients also report mild to moderate symptoms of anxiety or depression. However, many people with CFS don’t have depression or any other psychiatric illness. Depression may be a secondary effect of 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 CFS patients than in the general population. Many CFS patients have a history of allergies years before the onset of the syndrome. Sometimes patients report a worsening of allergic symptoms or the onset of new allergies after becoming ill with CFS. Because allergies are so common in people with 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 chronic fatigue syndrome (CFS). Treatment is based on individual symptoms. If you’re diagnosed with 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 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 not become deconditioned because this may complicate your CFS. Certain types of physical 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 CFS identify negative beliefs and behaviors that may be getting in the way of their recovery. It has been shown to help reduce symptoms of CFS. 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 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 CFS.
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 CFS sufferers experience profound fatigue even after very minimal exercise, so start off slowly and build up gradually. Many people find 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 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 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.
Causes of CFS/ME
It’s not known what causes CFS/ME, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness.
Suggested causes or triggers for CFS/ME include:
- viral infections, such as glandular fever
- bacterial infections, such as pneumonia
- problems with the immune system
- a hormone imbalance
- mental health problems, such as stress, depression and emotional trauma
- your genes – CFS/ME seems to be more common in some families.
Living with CFS/ME
Living with CFS/ME can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes.
CFS/ME can also affect your mental and emotional health, and have a negative effect on your self-esteem.
As well as asking your family and friends for support, you may find it useful to talk to other people with CFS/ME.
ME Association is a charity that provides information, support and practical advice for people affected by the condition. You can find a local support group on their website.
Despite a decade of research into the origins of chronic fatigue syndrome (CFS), researchers still don’t know what causes this debilitating disease. Neither are there known steps you can take to prevent CFS. However, research into the cause, control and prevention of CFS is being conducted.
Facts to Know
- Chronic fatigue syndrome (CFS) can affect all races, sexes and socioeconomic groups. It affects women at about 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.
- CFS does not appear to be a new illness. Relatively small outbreaks of similar disorders have been described in medical literature since the 1930s.
- This illness is called “chronic fatigue syndrome” because it reflects the most common symptom—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 illness.
- There is no evidence to indicate that CFS is contagious, but organizations like the American Red Cross recommend indefinite deferral of potential blood donors with a past or current history of CFS.
- Without objective diagnostic criteria, the prevalence of CFS is difficult to measure. The CDC reports that at least 1 million people in the United States have CFS. 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 CFS.
- The severity of CFS symptoms varies with each individual. Besides debilitating fatigue that does not go away even with rest, several common symptoms of CFS include:
- sleep problems
- 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 CFS. Symptoms can wax and wane, becoming more severe or improving over time.
- No specific diagnostic tests or therapies for CFS exist. If your health care professional has diagnosed you with CFS, treatment will focus on relieving symptoms, improving function and restoring quality of life.
- There is no known cause of CFS. Viruses have been linked to the condition, including Epstein-Barr virus; human herpes virus type 6 (HHV-6); enteroviruses; Ross River virus; and rubella. 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 CFS, but it is not known if these are cause or effect. No cause has yet been definitively connected to CFS, but research is ongoing.
- If there is no cure for chronic fatigue syndrome (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 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 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 CFS if there is no known cause and no diagnostic tests available?Your health care professional will determine if you have 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.
- Will I ever be cured?There is no cure for CFS at this time. In fact, there is no treatment for CFS, only treatments for the symptoms of 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 CFS, the course of your individual illness cannot be predicted. It is important to realize that people with CFS can be helped with appropriate care from a health care provider who understands CFS.
- Is CFS contagious?There is no evidence that it can be transmitted through intimate or casual contact or that people with CFS need to be isolated in any way.
- What are the symptoms of CFS?Besides debilitating fatigue that is not alleviated by rest, common symptoms of 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 and sleep that is unsatisfying and fails to refresh. You may not experience all of these symptoms. The severity of symptoms varies with each individual.
- Can 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 CFS. Even if you’ve been diagnosed with 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 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.
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