Chronic fatigue syndrome (CFS) or systemic exertion intolerance disease (SEID) facts
What is chronic fatigue syndrome (CFS or SEID)?
Controversy about the definition of chronic fatigue syndrome (CFS) finally led an international panel of CFS research experts in 1994 to establish a precise definition of CFS so that the syndrome could actually be diagnosed. There are two criteria developed by this panel that both define and diagnose CFS. The patient must have both of the following criteria:
In addition, four symptoms of the symptoms listed above must have persisted or recurred during six or more consecutive months of illness and must not have predated the severe chronic fatigue (the symptoms must have occurred at the same time or after severe chronic fatigue appeared but not before).
Why so much controversy? There are at least three major reasons for controversy:
Consequently, the disease is diagnosed by excluding the diseases that may cause the symptoms (termed a diagnosis of exclusion) listed above yet still fit the two defined criteria established by the panel of CFS experts in 1994. It is not unusual for patients to undergo an extensive battery of tests to rule out other diseases before a patient is determined to fit the CFS diagnostic criteria. Unfortunately, many patients who have subsequently been diagnosed to have CFS also have had some of the conditions and symptoms listed above. Without the CFS criteria, diagnosis would even be more controversial.
Controversy still remains. Some individuals want to rename the disease. Some clinicians want to change the 1994 criteria and others do not. Until a definitive cause is proven, controversies about names, diagnosis, treatments, and other aspects of CFS will likely remain. In February 2015, the Institute of Medicine, at the request of the CDC and others, completed a report on myalgic encephalomyelitis/chronic fatigue syndrome. The new report suggested a name change to systemic exertion intolerance disease (SEID) to better identify the disease with less prejudice and also slightly modified some criteria of the disease.
Because this report is so new and is undergoing review, it is not clear if all of it will be accepted by the medical community. The CDC has yet to make name changes in its CFS publications so this article will present information on both the current CFS and the new SEID; in most instances, the basic information has not changed (for example, cause, symptoms, and treatment).
What causes chronic fatigue syndrome or systemic exertional intolerance disease?
No defined cause of CFS or SEID is known, even after about two decades of research on patients who fit the CFS or SEID criteria. Although many diseases coexist with CFS or SEID in patients, there are no proven links to any known disease (physical or mental) or pathogen (including viral) that is responsible for CFS or SEID development.
The Centers for Disease Control (CDC) indicates that researchers are still trying to identify the cause(s) of CFS/SEID and offer some speculation about the ongoing research. For example, they suggest the possibility that CFS/SEID represents an endpoint of multiple diseases or conditions such as viral infections, stress, and toxin exposure. However, the CDC states that "CFS is not caused exclusively by any single recognized infectious disease agent." This includes Epstein-Barr virus, Lyme disease bacteria (Borrelia burgdorferi), human retroviruses, bornaviruses, fungi, Mycoplasma spp, and many others. However, if a person has been infected with several (at least three) different pathogens, the chances of getting CFS/SEID goes up. In addition, some researchers had suggested that a new virus found in some CFS/SEID patients (termed XMRV or xenotropic murine leukemia virus-related virus) may be a candidate for cause, but a recent larger study has disproven this theory. In addition, although the CDC says no autoimmune changes like lupus or other diseases are found in CFS/SEID, many CFS/SEID patients have high levels of immune complexes and anti-self antibodies in their blood that may be a clue about what causes CFS/SEID. The CDC mentions other findings (allergies, T-cell activation, and cytokines), but none have any direct link to causing CFS/SEID.
What are risk factors for CFS/SEID?
Without knowing the cause of CFS/SEID, it is difficult to determine risk factors. However, statistics gathered about people with diagnosed CFS/SEID do tell something about some high-risk groups. For example, although people of every age, gender, race, and economic group can get CFS/SEID, it is most commonly diagnosed in people in the 40- and 50-year-old age group. In addition, CFS/SEID is diagnosed about four times as often in women (some investigators consider menopause as a possible risk factor). In the pediatric-aged group, teens are most often affected.
What are systemic exertion intolerance disease or chronic fatigue syndrome symptoms and signs?
The symptoms and signs of CFS/SEID are complex but specific. The patient must have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis. In addition, the patients have four or more of the following symptoms that either occurred at the same time or after the severe chronic fatigue. The symptoms are substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours. Patients may often have additional symptoms such as double vision, mild fevers, earaches, diarrhea, and many other symptoms, but they do not fit into the criteria that are considered to be part of the definition of CFS.
The following are five main symptoms that the new IOM considers key for SEID or CFS:
What are CFS/SEID symptoms in men?
CFS/SEID symptoms in men need to fit the time and type (six months and four symptoms) criteria stated above to be diagnosed with the disease. Currently, chronic fatigue syndrome is diagnosed much more frequently in females than in males. General symptoms in men that can occur that are described by male patients are similar to those in females, but clinicians speculate that many men are reluctant to say they have symptoms of muscle pain, malaise, headaches, and other symptoms due to cultural inhibitions and training. Many doctors speculate that men need to be more open in describing their symptoms to their doctors.
What are SEID/CFS symptoms in women?
As stated above for men, CFS/SEID symptoms in women need to fit the time and type (six months and four symptoms) criteria stated above to be diagnosed with the disease. Women are much more likely to be diagnosed with chronic fatigue syndrome than men. Clinicians speculate that women are more forthcoming with their doctors about chronicity of symptoms, including the four major symptom criteria (substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours) than are men because of cultural expectations and training.
How is chronic fatigue syndrome (or systemic exertion intolerance disease) diagnosed?
Chronic fatigue syndrome (CFS) or SEID is a diagnosis made by excluding many diseases that have chronic fatigue as a major or frequent symptom. Unfortunately, there are no physical signs or diagnostic tests that identify CFS. The diagnosis is made by fitting the two major criteria set out by a group of CFS research experts.
The first criteria states the patient must have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis (a diagnosis by exclusion).
The second criteria requires the patients have four or more of the following symptoms that either occurred at the same time or after the severe chronic fatigue. The symptoms are substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours.
Although there are no lab studies that identify CFS, lab studies do provide some supportive evidence for a diagnosis. Lab studies that confirm either the presence or absence of cause of other diseases help define the diagnosis of exclusion. Additionally, many patients with CFS have certain lab findings listed below:
When taken as a group, these tests support a diagnosis of CFS but are not definitive; only the patients who meet the two established criteria for CFS are definitively diagnosed with CFS.
Below is the new proposed criteria for SEID; the new report used an older designation (ME/CFS) but the criteria are for SEID; this fact shows the medical terminology problems when new names of diseases are proposed.
What is the treatment for CFS/SEID?
There is no known cure for CFS/SEID chronic fatigue syndrome; treatment is based on those therapies that reduce the symptoms. In general, patients who are diagnosed within the first two years of symptoms respond better to symptomatic treatment than those patients diagnosed after two or more years of having the disease. Treatments to reduce symptoms are individualized for each patient as no single therapy helps all CFS/SEID patients.
Drug therapies (bupropion [Wellbutrin], sertraline [Zoloft], and other antidepressant drugs) are used to treat symptoms of sleep, pain, and psychological problems. Some have used Adderall (off-label use). Other therapies that are used include stress reduction and lifestyle changes (which may include diet and exercise reduction). Some investigators suggest diet and nutrition play a role and recommend vitamin D, B6, B12, lysine, and glutathione supplements while others do not. Some clinicians may prescribe antibiotics such as metronidazole (Flagyl) or amoxicillin and clavulanic acid (Augmentin) if the patient has high levels of antibodies that react with C. pneumoniae or other organisms. Other treatments that claim some positive effects on CFS symptoms include holistic treatments such as bananas, maca (a plant root from Peru), pau d'arco (herb from the bark of the taheebo tree in Central America), and spirulina (plankton).
Acupuncture and fluorescent-light treatments also are claimed to help CFS patients. Most of these other therapies have not been well studied by experts who treat CFS.
Most clinicians agree that patients with CFS need a team approach to their illness. The most disruptive symptoms should be addressed first. In general, the therapy will be a combination of psychological counseling (to help with the day-to-day burden CFS imposes on the patient's life) and mild guided exercise (a physical therapist might be able to help; care should be taken to not be too strenuous). Cognitive-behavioral therapy seems to work well with pediatric-aged patients.
What is chronic fatigue syndrome (CFS or SEID)?
Controversy about the definition of chronic fatigue syndrome (CFS) finally led an international panel of CFS research experts in 1994 to establish a precise definition of CFS so that the syndrome could actually be diagnosed. There are two criteria developed by this panel that both define and diagnose CFS. The patient must have both of the following criteria:
In addition, four symptoms of the symptoms listed above must have persisted or recurred during six or more consecutive months of illness and must not have predated the severe chronic fatigue (the symptoms must have occurred at the same time or after severe chronic fatigue appeared but not before).
Why so much controversy? There are at least three major reasons for controversy:
Consequently, the disease is diagnosed by excluding the diseases that may cause the symptoms (termed a diagnosis of exclusion) listed above yet still fit the two defined criteria established by the panel of CFS experts in 1994. It is not unusual for patients to undergo an extensive battery of tests to rule out other diseases before a patient is determined to fit the CFS diagnostic criteria. Unfortunately, many patients who have subsequently been diagnosed to have CFS also have had some of the conditions and symptoms listed above. Without the CFS criteria, diagnosis would even be more controversial.
Controversy still remains. Some individuals want to rename the disease. Some clinicians want to change the 1994 criteria and others do not. Until a definitive cause is proven, controversies about names, diagnosis, treatments, and other aspects of CFS will likely remain. In February 2015, the Institute of Medicine, at the request of the CDC and others, completed a report on myalgic encephalomyelitis/chronic fatigue syndrome. The new report suggested a name change to systemic exertion intolerance disease (SEID) to better identify the disease with less prejudice and also slightly modified some criteria of the disease.
Because this report is so new and is undergoing review, it is not clear if all of it will be accepted by the medical community. The CDC has yet to make name changes in its CFS publications so this article will present information on both the current CFS and the new SEID; in most instances, the basic information has not changed (for example, cause, symptoms, and treatment).
What causes chronic fatigue syndrome or systemic exertional intolerance disease?
No defined cause of CFS or SEID is known, even after about two decades of research on patients who fit the CFS or SEID criteria. Although many diseases coexist with CFS or SEID in patients, there are no proven links to any known disease (physical or mental) or pathogen (including viral) that is responsible for CFS or SEID development.
The Centers for Disease Control (CDC) indicates that researchers are still trying to identify the cause(s) of CFS/SEID and offer some speculation about the ongoing research. For example, they suggest the possibility that CFS/SEID represents an endpoint of multiple diseases or conditions such as viral infections, stress, and toxin exposure. However, the CDC states that "CFS is not caused exclusively by any single recognized infectious disease agent." This includes Epstein-Barr virus, Lyme disease bacteria (Borrelia burgdorferi), human retroviruses, bornaviruses, fungi, Mycoplasma spp, and many others. However, if a person has been infected with several (at least three) different pathogens, the chances of getting CFS/SEID goes up. In addition, some researchers had suggested that a new virus found in some CFS/SEID patients (termed XMRV or xenotropic murine leukemia virus-related virus) may be a candidate for cause, but a recent larger study has disproven this theory. In addition, although the CDC says no autoimmune changes like lupus or other diseases are found in CFS/SEID, many CFS/SEID patients have high levels of immune complexes and anti-self antibodies in their blood that may be a clue about what causes CFS/SEID. The CDC mentions other findings (allergies, T-cell activation, and cytokines), but none have any direct link to causing CFS/SEID.
What are risk factors for CFS/SEID?
Without knowing the cause of CFS/SEID, it is difficult to determine risk factors. However, statistics gathered about people with diagnosed CFS/SEID do tell something about some high-risk groups. For example, although people of every age, gender, race, and economic group can get CFS/SEID, it is most commonly diagnosed in people in the 40- and 50-year-old age group. In addition, CFS/SEID is diagnosed about four times as often in women (some investigators consider menopause as a possible risk factor). In the pediatric-aged group, teens are most often affected.
What are systemic exertion intolerance disease or chronic fatigue syndrome symptoms and signs?
The symptoms and signs of CFS/SEID are complex but specific. The patient must have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis. In addition, the patients have four or more of the following symptoms that either occurred at the same time or after the severe chronic fatigue. The symptoms are substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours. Patients may often have additional symptoms such as double vision, mild fevers, earaches, diarrhea, and many other symptoms, but they do not fit into the criteria that are considered to be part of the definition of CFS.
The following are five main symptoms that the new IOM considers key for SEID or CFS:
What are CFS/SEID symptoms in men?
CFS/SEID symptoms in men need to fit the time and type (six months and four symptoms) criteria stated above to be diagnosed with the disease. Currently, chronic fatigue syndrome is diagnosed much more frequently in females than in males. General symptoms in men that can occur that are described by male patients are similar to those in females, but clinicians speculate that many men are reluctant to say they have symptoms of muscle pain, malaise, headaches, and other symptoms due to cultural inhibitions and training. Many doctors speculate that men need to be more open in describing their symptoms to their doctors.
What are SEID/CFS symptoms in women?
As stated above for men, CFS/SEID symptoms in women need to fit the time and type (six months and four symptoms) criteria stated above to be diagnosed with the disease. Women are much more likely to be diagnosed with chronic fatigue syndrome than men. Clinicians speculate that women are more forthcoming with their doctors about chronicity of symptoms, including the four major symptom criteria (substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours) than are men because of cultural expectations and training.
How is chronic fatigue syndrome (or systemic exertion intolerance disease) diagnosed?
Chronic fatigue syndrome (CFS) or SEID is a diagnosis made by excluding many diseases that have chronic fatigue as a major or frequent symptom. Unfortunately, there are no physical signs or diagnostic tests that identify CFS. The diagnosis is made by fitting the two major criteria set out by a group of CFS research experts.
The first criteria states the patient must have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis (a diagnosis by exclusion).
The second criteria requires the patients have four or more of the following symptoms that either occurred at the same time or after the severe chronic fatigue. The symptoms are substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours.
Although there are no lab studies that identify CFS, lab studies do provide some supportive evidence for a diagnosis. Lab studies that confirm either the presence or absence of cause of other diseases help define the diagnosis of exclusion. Additionally, many patients with CFS have certain lab findings listed below:
When taken as a group, these tests support a diagnosis of CFS but are not definitive; only the patients who meet the two established criteria for CFS are definitively diagnosed with CFS.
Below is the new proposed criteria for SEID; the new report used an older designation (ME/CFS) but the criteria are for SEID; this fact shows the medical terminology problems when new names of diseases are proposed.
What is the treatment for CFS/SEID?
There is no known cure for CFS/SEID chronic fatigue syndrome; treatment is based on those therapies that reduce the symptoms. In general, patients who are diagnosed within the first two years of symptoms respond better to symptomatic treatment than those patients diagnosed after two or more years of having the disease. Treatments to reduce symptoms are individualized for each patient as no single therapy helps all CFS/SEID patients.
Drug therapies (bupropion [Wellbutrin], sertraline [Zoloft], and other antidepressant drugs) are used to treat symptoms of sleep, pain, and psychological problems. Some have used Adderall (off-label use). Other therapies that are used include stress reduction and lifestyle changes (which may include diet and exercise reduction). Some investigators suggest diet and nutrition play a role and recommend vitamin D, B6, B12, lysine, and glutathione supplements while others do not. Some clinicians may prescribe antibiotics such as metronidazole (Flagyl) or amoxicillin and clavulanic acid (Augmentin) if the patient has high levels of antibodies that react with C. pneumoniae or other organisms. Other treatments that claim some positive effects on CFS symptoms include holistic treatments such as bananas, maca (a plant root from Peru), pau d'arco (herb from the bark of the taheebo tree in Central America), and spirulina (plankton).
Acupuncture and fluorescent-light treatments also are claimed to help CFS patients. Most of these other therapies have not been well studied by experts who treat CFS.
Most clinicians agree that patients with CFS need a team approach to their illness. The most disruptive symptoms should be addressed first. In general, the therapy will be a combination of psychological counseling (to help with the day-to-day burden CFS imposes on the patient's life) and mild guided exercise (a physical therapist might be able to help; care should be taken to not be too strenuous). Cognitive-behavioral therapy seems to work well with pediatric-aged patients.
Is there a cure for CFS/SEID?
Although some people may spontaneously have a reduction or cessation of some symptoms of CFS/SEID, especially with treatments described above, there is no known cure for CFS/SEID. The current goal is to relieve symptoms; accomplishing symptom reduction is often done by several different activities that patients can use at the same time. Such combined activity (or therapy) may include the following:
What is the prognosis (outcome) for CFS/SEID?
Because full recovery from CFS/SEID is very infrequent (only 5%-10% of adult patients diagnosed), the prognosis usually ranges from fair to poor. Many patients can only work at part-time jobs; some patients become bedridden. Mental impairment, especially memory loss and the ability to concentrate are very disconcerting to CFS/SEID patients. Even with symptomatic treatment, some patients may continue with a slow decline in their ability to function. Some studies suggest that even about two years after diagnosis and symptomatic treatment, over half of the CFS/SEID patients still were fatigued.
The prognosis for children is better than that for adults as most children recover completely after about one to four years of treatment; although during recovery, they often have problems in school with attention and memory. Many will also have anxiety and depression. Researchers suggest that cognitive-behavioral therapy is a major effective treatment for adolescents with CFS/SEID.
Source: http://www.rxlist.com
The Centers for Disease Control (CDC) indicates that researchers are still trying to identify the cause(s) of CFS/SEID and offer some speculation about the ongoing research. For example, they suggest the possibility that CFS/SEID represents an endpoint of multiple diseases or conditions such as viral infections, stress, and toxin exposure. However, the CDC states that "CFS is not caused exclusively by any single recognized infectious disease agent." This includes Epstein-Barr virus, Lyme disease bacteria (Borrelia burgdorferi), human retroviruses, bornaviruses, fungi, Mycoplasma spp, and many others. However, if a person has been infected with several (at least three) different pathogens, the chances of getting CFS/SEID goes up. In addition, some researchers had suggested that a new virus found in some CFS/SEID patients (termed XMRV or xenotropic murine leukemia virus-related virus) may be a candidate for cause, but a recent larger study has disproven this theory. In addition, although the CDC says no autoimmune changes like lupus or other diseases are found in CFS/SEID, many CFS/SEID patients have high levels of immune complexes and anti-self antibodies in their blood that may be a clue about what causes CFS/SEID. The CDC mentions other findings (allergies, T-cell activation, and cytokines), but none have any direct link to causing CFS/SEID.
Source: http://www.rxlist.com
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