WHAT IS CFS?
What is chronic fatigue syndrome?
Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (ME) and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems.
Although many questions remain, there has been tremendous progress during the past 20 years in our understanding of this disease. For instance, researchers have uncovered biologic abnormalities in CFS patients, producing a “critical mass” of scientific evidence that CFS is a real biologic illness, not a psychiatric condition. Abnormalities have been found in the immune system, the brain, the hypothalamic-pituitary-adrenal (HPA) axis, the cardiovascular system, the autonomic nervous system, and the endocrine system of CFS patients. Although the cause of CFS isn’t yet understood, there is a growing body of research showing that physiologic, environmental and behavioral events experienced over the lifespan—combined with a genetic predisposition—may lead to CFS.
What are the symptoms of CFS?
As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it’s not the kind of fatigue experienced after a particularly busy day or week, a sleepless night, or stressful events. It’s a severe, incapacitating fatigue that isn’t improved by bed rest and that may be worsened by physical or mental activity. Although its name trivializes the illness as little more than tiredness, CFS brings with it a constellation of debilitating symptoms. The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include sleep difficulties, problems with concentration and short-term memory, flu-like symptoms, pain in the joints and muscles, tender lymph nodes, sore throat, and headache. A distinctive hallmark of the illness is postexertional relapse (sometimes to referred to as postexertional malaise), a worsening of symptoms following physical or mental exertion that can require an extended recovery time.
The severity of CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, CFS has a profound impact. About 25 percent of people with CFS are disabled by the illness, and there’s often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges of CFS.
It’s not uncommon for people with CFS to have the following symptoms:
- Visual disturbances (blurring, light sensitivity, eye pain)
- Psychological problems (irritability, mood swings, anxiety, panic attacks)
- Difficulty maintaining upright posture, dizziness, balance problems and fainting
- Chills and night sweats
- Gastrointestinal disturbances
- Allergies and sensitivities to foods, odors, chemicals, medications
- Brain fog and cognitive impairment
- Gynecological problems including PMS
Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions.
Common comorbid conditions include:
- Fibromyalgia
- Orthostatic intolerance (e.g., postural orthostatic tachycardia syndrome or POTS, neurally mediated hypotension or NMH, or vasovagal syncope)
- Irritable bowel syndrome
- Interstitial cystitis
- Temporomandibular joint disorder
- Chronic pelvic pain
- Multiple chemical sensitivity
Because CFS can resemble other comorbid conditions—as well as medical disorders like mononucleosis, multiple sclerosis, chronic Lyme disease, and lupus—it’s frequently misdiagnosed.
Who gets CFS?
At least one million people in the United States have CFS and the condition affects millions more worldwide. The most at-risk group for CFS appears to be women. Although research has shown that CFS is about four times as common in women as men, CFS strikes people from every age, racial, ethnic, and socioeconomic group.
How is CFS diagnosed?
Studies show that fewer than 20 percent of CFS patients in the United States have been properly diagnosed. Diagnosing CFS is a challenging process because there is no diagnostic test or biomarker to clearly identify the disorder, and other medical conditions must be ruled out before a diagnosis of CFS can be established.
Diagnosis can also be complicated by the fact that the symptoms and severity of CFS vary considerably from person to person. Seek care first from the health care provider who knows you best and will work with you to rule out other possible causes of symptoms and identify other comorbid conditions. The Toolkit for Health Care Professionals is a helpful resource to share with your provider.
How is CFS treated?
Since no cause or cure for CFS has been identified, treatment is directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatments that can improve symptoms, increase function, and allow people with CFS to engage in activities of daily living. Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can be relieved through the use of prescription and over-the-counter medications. People with this illness may have unusual responses to medications, so extremely low doses should be tried first and gradually increased as appropriate.
Alternative therapies are often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management. People with CFS often experience guilt, anger, denial, financial pressures, anxiety, and depression because of the limitations imposed by this illness. Learning to cope with these emotions and to make appropriate lifestyle changes is one of the best ways of managing CFS. Therapies that help people improve coping skills include counseling for emotional and mental health, deep breathing and muscle relaxation techniques, cognitive behavioral therapy, and massage.
Learning to manage activity levels is vital to managing the illness itself. This requires a new way of defining exercise. Although vigorous aerobic exercise is beneficial for many chronic illnesses, traditional exercise routines may not be tolerated, so exercise programs aimed at optimizing aerobic capacity aren’t recommended. Instead, learning to pace activities and working with a healthcare practitioner to reduce the effects of deconditioning, maintain strength, and improve flexibility is the best approach.
More resources are available at: http://www.cfids.org/about-cfids/default.asp