What Does a Chronic Fatigue Syndrome Patient Look Like?
While people of almost every age, sex, race and economic class can get chronic fatigue syndrome, middle-aged women are at the highest risk.
Some research suggests physical and/or psychological stress may increase one’s risk of getting chronic fatigue syndrome but stressful events are not a factor for many. An infectious onset (a cold that never goes away) is common. For some people the onset of ME/CFS is so sudden and striking they can remember the day they became ill. For others, the onset is more gradual with periods of illness and wellness intersecting with each other.
As with fibromyalgia women appear most likely to come down with ME/CFS. ME/CFS does not appear to be contagious, but some evidence suggests a hereditary component is present and that it can run in families.
How Many People Have ME/CFS?
Chronic Fatigue Syndrome (ME/CFS) affects approximately one million people in the United States. With rates of disability similar to those in multiple sclerosis, ME/CFS often places a high economic burden on families ( approximately $25,000 a year in lost wages and medical costs). Approximate total costs to the US economy of 19-25 billion dollars a year suggest chronic fatigue syndrome is a major disorder with significant health and economic implications in the U.S.
Diagnosing Chronic Fatigue Syndrome
Fatigue is one of the symptoms people most commonly see doctors for, and diagnosing chronic fatigue syndrome requires ruling out other disorders that can mimic its symptoms such as thyroid disease, autoimmune disorders, anemia, depression, etc. ME/CFS can only be diagnosed by a physician.
Because no laboratory tests unique to the disease have been found patients are diagnosed using symptoms, and by eliminating other diseases. The standard definition for ME/CFS ( International or Fukuda Definition (1994)) states chronic fatigue syndrome is characterized by unexplained severe fatigue lasting for over six months that is not substantially alleviated by rest. This definition proposes that people with ME/CFS must also display four or more of the following symptoms; post-exertional malaise, unrefreshing sleep, memory and/or concentration problems, muscle and/or joint pains, headaches, sore throat and tender lymph nodes.
Newer definitions (Canadian Consensus Criteria) developed by ME/CFS practitioners and researchers focused on the hallmark symptoms of the disorder, post-exertional malaise and cognitive problems, have been proposed. Post-exertional malaise (or relapse) refers to a flareup of symptoms after mild physical or mental exertion.
What Are the Symptoms?
Fatigue is an important symptom in ME/CFS but is just one of many symptom found. A more accurate description of the fatigue present in ME/CFS – called postexertional malaise – is believed to be a hallmark of the disorder. One study found people with ME/CFS experience five types of fatigue not present in the general population. Other common symptoms include cognitive problems, muscle and joint pain without swelling, difficulty standing without symptoms, headaches, stimulus overload, etc. Find out more about the symptoms in ME/CFS below.
Prognosis: What You Can Expect
Recovery can occur at any time but recovery rates are highest in the first couple years. Most people with ME/CFS appear to’ improve’ over time as they reduce their activity levels to limit ‘crashes’. Recovery can occur in patients who have had this disease for decades,but total recoveries are rare. Treatment is mostly symptomatic; ie. it focuses on relieving symptoms rather than addressing the cause of the disorder. Not enough studies have been done to determine if ME/ CFS is associated with increased mortality.
Causes of Chronic Fatigue Syndrome (ME/CFS)
Studies suggest a wide variety of immune, endocrine, cardiovascular and central nervous abnormalities are present. Possible causes include damage to parts of the brain governing cognition, memory, mood, energy and perception, autonomic nervous system dysfunction, immune system deficits, chronic infections, rampant free radical production, cardiac dysfunction and others. Much of the research at present is focusing on the cardiovascular,immune and autonomic nervous systems.
Treating Chronic Fatigue Syndrome (ME/CFS)
Treatment for ME/CFS focuses on treating symptoms not curing but knowledgeable doctors provide a wide array of pharmaceutical drugs, alternative therapies, nutritional aids and coping strategies.
What About The Weird Name?
People with ME/CFS have objected to a name that trivializes their illness since its inception at the hands of a CDC convened panel in the early 1990’s. Efforts begun in the late 2,000’s to join an early name for this disorder (myalgic encephalomyelitis) with its current name and call the disorder ME/CFS (or CFS/ME) have largely succeeded with governmental organizations, researchers and doctors routinely referring to this disorder as ME/CFS.
This website uses both terms.