Chronic fatigue syndrome is a chronic and debilitating condition involving severe fatigue and sleep problems. This complex illness is difficult to treat and diagnose. The symptoms can last from six months to a few years and for some, symptoms can get worse over time.
Chronic fatigue syndrome (CFS) is also referred to as myalgic encephalomyelitis (ME). More recently, this condition has been coined “Systemic Exertion Intolerance Disease” by the Institute of Medicine, now known as the Health and Medicine Division of the National Academy of Sciences, Engineering, and Medicine.
Those who have CFS are not able to function the way they did before they became ill. They may lose the ability to attend work or school or participate in their social life. Even participating in daily life activities such as cooking a meal or taking a shower can become difficult or even impossible for someone with CFS. In fact, one in four individuals with CFS is housebound or bedbound for long periods of time during the course of their illness. CFS can last for months or years and there is currently no cure.
Symptoms and Diagnosis
The following criteria are used to diagnose chronic fatigue syndrome:
- The fatigue and accompanying symptoms must last, or come and go for at least six months in adults and three months in children and adolescents
- The symptoms cannot be explained by other illnesses
- Patients experience all of the following:
- extreme fatigue or mental fatigue
- not feeling well after being present/active (aka post-exertion malaise)
- sleep disturbances such as insomnia, narcolepsy, or sleep apnea
- Patients experience two or more of the following symptoms related to brain function:
- problems with concentration, short-term memory, or thinking of the right word
- Sensitivity to light, noise, or emotions
- Confusion, slow thinking, feeling disoriented
- Muscle weakness or muscle coordination problems
- Patients must experience one or more from two of these groups of symptoms:
- Recurrent flu-like symptoms, sore throat, tender lymph nodes, new sensitivities to food, medicines, odors, or chemicals
- Low body temperature, cold hands and feet, sweating, feeling worse under stress
- Lightheadedness, dizziness, very fast heartbeat, shortness of breath when active
Most cases of CFS are not accurately diagnosed. In fact, most medical schools in the US do not have CFS as a part of their physician training. Perhaps due to the vague nature of the symptoms, the illness is often misunderstood and unfortunately, may not be taken seriously by some healthcare providers.
Who Does It Affect?
There are between 800,000 and 2.5 million individuals who suffer from CFS in the United States alone. However, studies reveal that a staggering 90% of those people have not been diagnosed. Chronic fatigue syndrome can affect anyone but is most often seen in women between the ages of 40 and 60 years. While the diagnosis is more frequent among Caucasian individuals, it is quite possible that it has simply been missed by healthcare professionals in other races and minorities. The Centers for Disease Control and Prevention (CDC) estimates that CFS can cost the economy up to 24 billion dollars a year in medical bills and lost income.
Chronic Fatigue Syndrome in Children
Few studies have been completed on children with CFS, although some scientists estimate that it may affect up to two in every 100 children and adolescents. Diagnosis of CFS is extremely difficult in children, as the symptoms often overlap with other common childhood ailments.
Children with CFS may experience sleep problems and unexplained pain. The chronic pain experienced by children is more likely to be a headache or stomach pain than the deep muscle and joint pain experienced by adults. Children and adolescents with CFS often miss many days of school and they may be misdiagnosed with school phobia.
What Causes Chronic Fatigue Syndrome?
Doctors and scientists have not yet been able to identify a cause of chronic fatigue syndrome. It is possible that it has more than one cause. Several possibilities are currently being investigated by researchers, including:
- Infections: Doctors have noticed a trend that many cases of CFS begin with a case of flu-like symptoms. Additionally, about one in ten people diagnosed with Epstein-Barr virus, Ross River virus, or Coxielle burnetti will go on to develop symptoms that meet the criteria for CFS. Scientists have suspected that an infection may trigger a case of CFS. Scientists have ruled out human herpesvirus 6, enterovirus, rubella, Candida albicans, bornaviruses, mycoplasma, and human immunodeficiency virus (HIV) as possible causes of CFS. Although there has been no research thus far that has conclusively pointed to one or more viruses as a definitive cause of CFS, research is still ongoing.
- Immune System Changes: CFS shares some features with autoimmune illnesses, in which the immune system attacks healthy tissues in your own body, such as rheumatoid arthritis. For instance, both CFS and other autoimmune diseases attack women more frequently than men and are characterized by signs of increased inflammation. Scientists have been investigating ways in which the immune system might be contributing to CFS.
- Stress: It is possible that CFS is triggered by stress, either physical or emotional, through its effect on the hypothalamic-pituitary-adrenal axis (HPA axis). This axis is a complex network that involves the hypothalamus, pituitary, and adrenal glands, and regulates the immune response, digestion, energy usage, and mood. It is possible that a disruption to this system could lead to the symptoms seen in CFS and research is ongoing.
- Changes in Energy Production: New research shows there may be a link between CFS and energy production and metabolism. The relationship at this point is still unclear and research is still in its early stages.
- Genetics: CFS can run in families, suggesting that there may be a genetic link. However, research at this point is still in its infancy. So far, no genes have been related to CFS have been discovered and more research is needed.
The fact remains that researchers don’t know what causes CFS. More research is desperately needed to provide some insight into mechanisms, causes, prevention, and possible risk factors.
How is Chronic Fatigue Syndrome Treated?
There is, unfortunately, no known cure for CFS. The current recommendation strategy is to treat the symptoms to manage the disease, focusing first on the symptoms that cause the most debilitation. Patient response to symptom treatment is mixed, with some patients experiencing more relief than others. Healthy lifestyle choices, such as a balanced diet, or nutritional therapies are always recommended to help alleviate and not exacerbate symptoms.
Avoiding Push-and-Crash Cycles: Push-and-crash cycles describe a pattern of behaviour often seen in patients with CFS. When an individual with CFS is having a “good day”, they may try to accomplish more than they usually would. This leads to a crash with more intense symptoms and many days of recovery. The cycle repeats when the patient feels better. The main problem with push-and-crash cycles is that it can lead to a long-term worsening of symptoms. Finding ways to avoid these cycles, and make activities easier may be helpful, like sitting instead of standing wherever possible, breaking tasks into small chunks, and taking frequent breaks.
Sleep Treatment: Since patients with CFS often don’t feel refreshed after sleep, physicians often start with healthy sleep strategies. Such strategies may include a regular sleep routine including a pre-arranged wind-down period, going to bed and waking up at the same time each day, limiting daytime naps, and avoiding stimulants before bed such as caffeine and alcohol, exercise, noise, light, or poor room temperature during sleep. If these changes do not help, prescribed medications or over-the-counter sleep aids may help. Some patients may need to be referred to a sleep specialist for treatment of sleep disorders such as narcolepsy or sleep apnea.
Pain Treatment: CFS patients frequently report deep muscle and joint pain, pressure headaches, or even skin tenderness. Treatment for pain includes a stepped approach that may include pain management strategies such as stretching, massage, heat, water therapy, or even acupuncture. Counseling may help patients to learn to cope with pain. If over the counter pain medications are not effective, a referring to a pain specialist may be required.
Help for Depression, Anxiety, and Stress: As is the case with any chronic, debilitating illness, CFS can lead to stress, depression, and anxiety. Depression and anxiety are serious disorders in themselves and should be taken seriously and treated when experienced by CFS patients. Any lifestyle techniques to treat anxiety and depression may be useful to those with CFS, such as yoga, stretching, deep breathing, massage, or muscle relaxation techniques. Medications to treat anxiety or depression, while they may be appropriate, should be prescribed with caution, as some may worsen other CFS symptoms.
Treating Dizziness and Lightheadedness: Patients with CFS may also experience symptoms of orthostatic intolerance or dizziness and lightheadedness that are triggered by standing or sitting upright. A referral to a cardiologist or a neurologist may be required. Some symptoms may be ameliorated through increases in daily fluid and salt intake and/or the use of support stockings. If symptoms do not improve, a prescription medication may be considered.
Improving Memory and Concentration: Problems with memory and concentration experienced by those with CFS may be treated with prescribed stimulants like the ones used to treat attention deficit hyperactivity disorder (ADHD). This type of treatment is used only cautiously, however, by physicians as it may contribute to “push-and-crash” cycles.
Confusion with Fibromyalgia
Chronic fatigue syndrome has a long history of being confused with other illnesses. Because the symptoms are fairly commonly experienced and varied, it can be difficult to differentiate those with CFS from those with fibromyalgia, or other similar syndromes. Although there are many overlapping symptoms, there are main clinical differences between the two. In fibromyalgia, the most debilitating symptom is muscle pain, whereas, in CFS, the most debilitating symptom is fatigue.
Patients who have been diagnosed with chronic fatigue syndrome should seek help and support from both medical professionals and friends and family. This difficult and debilitating condition requires significant lifestyle adjustments and may be difficult to manage alone.
Written by Lisa Borsellino, B. Sc.
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