What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS), affecting approximately two million Americans, is a long-lasting illness first discovered in a study in Los Angeles County in 1934. CFS, also known as myalgic encephalomyelitis, is a complicated disease that affects multiple systems of the body. It’s identified by severe tiredness, issues with thinking clearly, sleep disorders, problems with certain automatic body functions, and feeling excessively tired after exerting oneself. These issues significantly impact people’s day-to-day activities. If CFS goes undiagnosed for a long time due to lack of education on the disease, certain biases, and confusion over how to diagnose and treat it, the patient’s condition can worsen.
It’s important to note that CFS doesn’t just cause tiredness, but also issues with cognitive function and difficulty carrying out everyday tasks that continue for six months or more. CFS is a biological illness, not a mental health disorder. The exact cause of the disease is still unclear. Various processes and changes in body chemistry, affecting immune function, hormone control, and how the body responds to oxidative stress, have been considered as potential causes. Other possible causes include improper functioning of certain immune cells or the presence of specific immune system proteins, or autoantibodies. Researchers have suggested an infection could be the cause, but this has not been definitively confirmed.
Sometimes, CFS patients may come to the emergency room with a variety of complicated symptoms like an inability to stand up without feeling faint, excessive tiredness after exertion, chronic fatigue, and diarrhea.
What Causes Chronic Fatigue Syndrome?
The cause of Chronic Fatigue Syndrome (CFS) is still uncertain and a subject of much debate. Some believe it is caused by a single factor, while others think it might be caused by a combination of factors, possibly involving infections, the immune system, and genetic factors.
Genetics certainly seem to play a meaningful part in CFS. A lot of research shows family history can sometimes predict the appearance of CFS or similar issues related to fatigue. Even studies conducted on twins reveal that there is a connection between family ties and a likelihood of the condition. Some other studies have highlighted changes in certain genes in CFS patients, especially following physical activity. These gene alterations can impact metabolism and the body’s immune response. Furthermore, one study found a relationship between CFS and specific genetic variations and viral infections.
Infections are another area of concern. Viruses like the Epstein-Barr virus, the Human Herpesvirus 6, and the Human Parvovirus B19 are thought to possibly trigger CFS. Some people suspect that catching certain viral illnesses like glandular fever can set the body on a path towards the disease. Antibodies and antigens related to the Human Herpesvirus 6 appear more commonly in people with chronic fatigue syndrome, meaning this virus is more prevalent and more likely to reactivate in these people. Parvovirus B19, with a possible presence of high virus count or no presence of the virus at all, has also been linked to the development of chronic fatigue syndrome.
The immune system has shown some alterations in people with chronic fatigue syndrome as well. For instance, changes have been observed in levels of certain types of immune cells. In these patients, there has been a reported reduction in certain types of B cells with a coinciding rise in other types of B cells. Studies have also revealed elevated levels of certain types of antibodies in the blood, suggesting an alteration in the patient’s immunity. Some studies have even observed the presence of autoantibodies, or self-attacking antibodies, against cell structures and neurotransmitter receptors in people with chronic fatigue syndrome. This series of clues all hint towards the likelihood of a disrupted immune system in these patients.
Risk Factors and Frequency for Chronic Fatigue Syndrome
The occurrence of chronic fatigue syndrome (CFS) varies widely depending on factors such as how it’s defined, the population studied, and the design of the study. Rates have ranged from 0.007% to 2.8% amongst the general adult population in the U.S., and from 0.006% to 3.0% in the primary care population. While older studies reported rates between 0.004% and 0.56%, more recent studies indicate rates of 0.24% to 2.6%. One study estimated about 2.2 million American adults experience symptoms similar to CFS, which equates to around 1,197 people per 100,000.
The syndrome seems more prevalent in individuals between 40 and 70 years old, and more women are affected than men. CFS appears more prevalent amongst white people compared to non-white people, and amongst those on a lower income compared to those with a higher income and higher education level, indicating that stress and social risks may play a part in causing CFS. No noticeable difference is seen regionally throughout the country.
- The prevalence of CFS varies and can range from 0.007% to 2.8% in the general adult U.S. population.
- Rates also range from 0.006% to 3% amongst the primary care population.
- More recent studies show prevalence rates between 0.24% and 2.6%.
- Approximately 2.2 million American adults are estimated to suffer from CFS-like symptoms.
- CFS is more prevalent among 40 to 70-year-olds.
- Women are affected by CFS more than men.
- CFS is more common in the white population and those with lower income and education levels.
- No regional differences in the prevalence of CFS have been observed within the U.S.
Signs and Symptoms of Chronic Fatigue Syndrome
Chronic fatigue syndrome is a condition primarily characterized by extreme fatigue that doesn’t improve with rest and worsens after exertion. It’s also associated with various neurological, cardiovascular, respiratory, and gastrointestinal complaints. Moreover, it’s common for patients to suddenly experience this fatigue, often following a flu-like illness. This leads to something called post-exertional malaise – a state where normal activities lead to increased discomfort and fatigue that can take more than a day to recover from.
This syndrome can come with other symptoms as well. Chronic headaches and muscle pain, especially in younger patients, are common, and some may also experience joint pain. Many patients report disturbed sleep, feeling unrefreshed in the morning and experiencing excessive sleepiness during the day and insomnia at night. Cognitive issues, like slowed thinking, difficulty learning or processing new information, memory loss and a decreased attention span are frequent complaints.
Patients might also have issues related to their body’s automatic processes, including bouts of nausea and vomiting, excessive sweating at night, dizziness, and intolerance to alcohol or medication. Emotional symptoms like anxiety, panic attacks and difficulty with social interaction are also common. As a result, many people with chronic fatigue syndrome find their ability to work significantly reduced.
Testing for Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) is a condition diagnosed based on a medical exam and by ruling out other potential causes. It was initially thought to be caused mainly by viruses. In 1988, the U.S. Center for Disease Control and Prevention (CDC) established criteria for diagnosing CFS, focusing primarily on physical symptoms.
The Oxford criterion laid out in 1991 described a case of CFS as having mild to severe fatigue, muscle pain, and tiredness that has a clear starting point, severely affects mental and physical functions, lasts for at least six months, and affects the patient more than half of the time. It also required the presence of other symptoms, such as muscle aches, mood and sleep disturbances. Certain medical conditions and mental health disorders were ruled out.
However, this Oxford criterion was found to be too broad, including patients with milder symptoms and leading to generalized treatment plans. It couldn’t be applied to patients with more severe symptoms, prolonged pain, post-exertional malaise, and conditions mimicking CFS.
As a result, the CDC expanded their definition in 1994. According to this criterion, a patient had to have severe fatigue for more than six months and at least four additional symptoms such as a specific type of headache, muscle pain, joint pain, post-exertional malaise lasting more than a day, a sore throat, tender lymph nodes, unrefreshing sleep, and significant short-term memory or concentration impairment.
This CDC criterion was used extensively until 2015, when the Institute of Medicine (IOM) suggested a new criterion for diagnosing CFS. The current IOM criterion requires the patient to have the following significant symptoms for at least six months, affecting them moderately or severely for at least 50% of the time:
* Severe, new-onset fatigue not relieved by rest and not related to exertion
* Worsening symptoms and function after physical or cognitive stress
* Tiredness even after a good night’s sleep
In addition, patients must have one of the following additional symptoms:
* Problems with thinking or decision-making, made worse by exertion, stress, or time pressure
* Worsening symptoms when standing or sitting upright, alleviated by lying down or raising the feet
Starting the investigation of a patient with chronic fatigue involves a detailed history and physical exam, identifying the symptoms and ruling out any serious illnesses. Medical practitioners can use clinical questionnaires like the DePaul symptom questionnaire or the Center for Disease Control Symptom Inventory.
No single test or biomarker can diagnose CFS. Laboratory tests are performed to rule out other potential causes specific to the patient, such as urinalysis, blood tests, thyroid function tests, muscle enzyme tests and C-reactive protein tests. Testing for gluten sensitivity and other potential conditions as indicated may also be recommended. Viral titers are only used as necessary after clinical examination.
Treatment Options for Chronic Fatigue Syndrome
Chronic fatigue syndrome is a complex disorder and its treatment often subject to debate. A large study carried out in the UK in 2011 compared different treatments, such as cognitive-behavioral therapy (which helps patients manage their symptoms through changing their behaviors and ways of thinking), graded exercise therapy (which involves supervised, gradual increase in physical activity), adaptive pacing therapy (which teaches patients to balance rest and activity to avoid symptoms worsening), and traditional medical care. The results indicated that a combination of cognitive-behavioral therapy and graded exercise therapy can help improve symptoms, but including adaptive pacing therapy didn’t provide extra benefit.
However, there is still question about how significant the benefits from these therapies really are. Techniques like deep breathing, muscle relaxation, massage, yoga, and tai chi might also be beneficial. Additionally, any existing conditions that could worsen the symptoms of chronic fatigue syndrome should be treated.
Using cognitive-behavioral therapy has been shown to help with improving fatigue, mood and physical recovery after exertion, and it is also beneficial for reducing school absences in young patients. Graded exercise therapy encourages a steady increase in exercise times, with the eventual goal of managing 30 minutes of light exercise, five days a week, without causing patients to overdo it.
Medications such as nonsteroidal anti-inflammatory drugs can help provide relief from pain and inflammation, but opioid medications, which can be addictive, are reserved for the most severe cases. Several antidepressants and select medications for depression or anxiety have shown varying degrees of success in controlling these associated conditions. However, these medications do not influence the root cause of chronic fatigue syndrome.
Various antiviral medications and immune therapy treatments have been tested but found to be largely inconclusive. Some new treatments and trials show promise, such as the immunomodulator Rintatolimod, approved in Canada and Europe, and the antibody Rituximab. Another potential treatment undergoing experimentation is fecal microbiota transplantation, which transfers healthy gut bacteria from a donor to the patient. This technique has been suggested due to the suspected link between chronic fatigue syndrome and gastrointestinal microbiota imbalance. This treatment seems promising, but more research is needed.
What else can Chronic Fatigue Syndrome be?
Chronic fatigue syndrome is a condition that can make everyday tasks like cleaning, driving, and managing finances difficult. It is important for doctors to identify this condition because it can often be confused with other common health problems that share similar symptoms.
‘Chronic Fatigue Syndrome’ and ‘Chronic Fatigue’ are not the same. Chronic fatigue syndrome is a complex condition that affects the nervous system and involves inflammation in the brain. This condition, also known as myalgic encephalomyelitis, is associated with symptoms like poor sleep and impaired cognition. On the other hand, chronic fatigue is not linked to post-exertional malaise, unrefreshing sleep or cognitive impairment. Sometimes, the term ‘systemic exertion intolerance disease (SEID)’ is proposed as a clearer name for chronic fatigue syndrome to avoid any confusion.
Certain diseases relating to the immune system, like fibromyalgia, polymyalgia rheumatica, and conditions like lupus and rheumatoid arthritis can be difficult to distinguish from chronic fatigue syndrome. For accurate diagnosis, physicians must perform thorough medical check-ups and lab tests for autoantibodies.
Mental health conditions like depression, bipolar disorder, eating disorders, schizophrenia, and substance abuse are often underdiagnosed. Around 20% of patients who visit primary healthcare clinics may have an undetected depressive illness. In older people, symptoms such as fatigue, unrefreshing sleep, and cognitive decline could be indicating late-onset depression.
Endocrine disorders, diseases related to hormones, such as Addison’s disease, adrenal insufficiency, Cushing’s syndrome, thyroid abnormalities, and diabetes can all give rise to symptoms that resemble those of chronic fatigue syndrome.
Some blood and cancer-related diseases, as well as undiagnosed cancers, could have fatigue as a symptom. Age should not be the sole factor in deciding whether to conduct age-appropriate cancer screenings. Anemia, a condition where your body lacks enough red blood cells, can also cause excessive tiredness and fatigue.
Infections such as HIV, tuberculosis, and chronic hepatitis can have ongoing fatigue as their initial symptom.
Certain gut-related problems like inflammatory bowel disease and celiac disease can present with symptoms of chronic fatigue.
Neurological disorders like multiple sclerosis often have fatigue as the primary symptom. Conditions like dementia and pseudodementia can also be challenging to distinguish from chronic fatigue syndrome due to shared cognitive impairment.
Age-related orthostatic hypotension refers to a drop in blood pressure when you stand up from a sitting or lying position. Due to decreased autonomic responsiveness that comes with aging, this condition can worsen with inadequate fluid intake and taking multiple medications.
Respiratory conditions such as chronic obstructive pulmonary disease (COPD) and sarcoidosis may also cause chronic fatigue.
Sleep apnea, a sleep disorder where breathing repeatedly stops and starts, can lead to fatigue and unrefreshing sleep, two of the main symptoms of chronic fatigue syndrome. This is usually detected using a sleep study known as polysomnography.
What to expect with Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) is a condition without a cure, and its symptoms can last for many years. This illness often has periods of relief, called remissions, followed by periods of severe symptoms, known as relapses. According to a study, about half of the people with CFS may be able to go back to work either part-time or full-time.
There are factors that may make the condition worse, including having the disease for a long time, experiencing depression alongside CFS, extreme fatigue, and anxiety.
On the other hand, some factors can lead to more favorable results. This includes less severe feelings of tiredness at the start of the condition, feeling like you have some control over the symptoms, and not attributing the disease to any physical cause.
Even though CFS can seriously affect a person’s quality of life, there isn’t clear evidence that it increases the risk of death.
Possible Complications When Diagnosed with Chronic Fatigue Syndrome
People with chronic fatigue syndrome, like those with any long-term illness, often deal with feelings of depression, stress, and anxiety. Though chronic fatigue syndrome is not a mental health disorder, it’s a very challenging condition that can limit a person’s everyday activities. The unpredictability between good and not-so-good days can make it difficult for them to manage their education, career, and personal life as they try to balance their demands and ambitions. Some individuals with this syndrome frequently feel disheartened or, in some cases, even feel as though there’s no hope.
Preventing Chronic Fatigue Syndrome
Living with chronic fatigue syndrome, or CFS, can be a real challenge. People with this condition often experience a significant dip in their quality of life. What’s worse is that most people are perfectly fine, and even full of energy, prior to being struck by CFS. That sudden shift can be highly disheartening.
One of the most important things for coping with CFS is having a strong, supportive relationship with an understanding healthcare provider. A provider who truly listens to their patients, acknowledges their symptoms, and validates their experiences, is a huge boon in managing CFS.
Even though it can be disheartening to know that there’s no quick fix for CFS, it’s crucial to remember that a knowledgeable provider can team up with patients to manage the condition. Together, they can devise ways to handle the symptoms and help ensure that the patient’s quality of life is as high as possible.
