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I have the same symptoms as many of you with CFS. I have been diagnosed with IBS, migraine headaches and high blood pressure. I have excessive sweating, run a low grade fever and frequently have a sore throat. I can no longer carry laundry nor groceries up our stairs. I stay depressed all the time. I have no energy. I have asked my doctors about CFS. They all laugh at me and say that CFS is a garbage can answer that some doctors use when they can't find an answer. They think I am crazy. I know I am really sick. Does anyone know of any doctors in the Birmingham, Alabama area that actually treat CFS? If so, please let me know. Thanks.
In Reply to: Chronic Fatigue Syndrome posted by Gloria Watts on April 12, 2002 at 14:41:40:
Hi Gloria - I don't know of a good conventional doctor anywhere that can help you - it's just not in their best interest but if you want to put forth the effort and time to help yourself and reverse your health problems - contact me at (alternative.health@verizon.net) and I'll send you a Questionnaire to fill out - which will help me - to help you realize why you are experiencing health problems!
* S.H.A.P.E. *
In Reply to: Chronic Fatigue Syndrome posted by Gloria Watts on April 12, 2002 at 14:41:40:
In the back of my Yeast Syndrome book it has the
following doc names in Birmingham who treat candida
related syndrome and CFS. I have an older copy so
who knows if these practices are still active, but it's a
start.
L. Clark Granvlee, Jr. MD - 205.328.3000
Guss J. Prosch, Jr. MD - 205.823.6180
William J. Robertson, MD - 205.933.8141
C. Orian Truss, MD - 205.328.6481
Christopher Truss, MD - 205.823.3742
There are others in AL. but these were the ones in
Birmingham proper.
It looks like S.H.A.P.E. is willing to offer help as well.
Good luck.
In Reply to: Chronic Fatigue Syndrome posted by Gloria Watts on April 12, 2002 at 14:41:40:
Hi, Gloria.
This is a TOTALLY unnecessary set of conditions!
Take SHAPE up on his offer.
In the meantime, the solution to your conditions is here on this 'site. Because I am trying to do this public service on a shoestring, you may need to read a lot to get what you want. Your first reference would be Dr Pelletier's book.
Start here with the glossary.
Let us know what you learn.
Walt
In Reply to: Chronic Fatigue Syndrome posted by Gloria Watts on April 12, 2002 at 14:41:40:
If you or a loved one are concerned about possible CFS-related symptoms, this section will provide you with general information. However, be sure to contact a physician who can confirm or disprove a diagnosis because CFS symptoms can be similar to those of other illnesses.
What is CFS?
Demographics
Possible Causes of CFS
Diagnosis of CFS
Careful Consideration of Information about CFS
What is CFS?
Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made.
A. Definition of CFS
A great deal of debate has surrounded the issue of how best to define CFS. In an effort to resolve these issues, an international panel of CFS research experts convened in 1994 to draft a definition of CFS that would be useful both to researchers studying the illness and to clinicians diagnosing it. In essence, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria:
1) Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and 2) concurrently have four or more of the following symptoms: 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-exertional malaise lasting more than 24 hours. The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.
B. Similar Medical Conditions
A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis. Although these illnesses may present with a primary symptom other than fatigue, chronic fatigue is commonly associated with all of them.
C. Other Conditions That May Cause Similar Symptoms
In addition, there are a large number of clinically defined, frequently treatable illnesses that can result in fatigue. Diagnosis of any of these conditions would exclude a definition of CFS unless the condition has been treated sufficiently and no longer explains the fatigue and other symptoms. These include hypothyroidism, sleep apnea and narcolepsy, major depressive disorders, chronic mononucleosis, bipolar affective disorders, schizophrenia, eating disorders, cancer, autoimmune disease, hormonal disorders*, subacute infections, obesity, alcohol or substance abuse, and reactions to prescribed medications.
D. Other Commonly Observed Symptoms in CFS
In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequencies of occurrence of these symptoms vary from 20% to 50% among CFS patients. They include abdominal pain, alcohol intolerance, bloating, chest pain, chronic cough, diarrhea, dizziness, dry eyes or mouth, earaches, irregular heartbeat, jaw pain, morning stiffness, nausea, night sweats, psychological problems (depression, irritability, anxiety, panic attacks), shortness of breath, skin sensations, tingling sensations, and weight loss.
* Not all hormonal aberrations necessarily exclude a diagnosis of CFS. See Section 3C.
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Demographics
Several studies have helped to establish the distribution and frequency of occurrence of CFS. While no single study can be considered definitive — each approach has inherent strengths and weaknesses — epidemiologic studies have greatly improved our understanding of how common the disease is, which individuals are the most susceptible to developing it, whether it can be transmitted to others, and how the illness typically progresses in individuals.
A. How Common Is CFS?
One of the earliest attempts to estimate the prevalence of CFS was conducted by the Centers for Disease Control and Prevention (CDC) from 1989 to 1993. Physicians in four U.S. cities were asked to refer possible CFS patients for clinical evaluation by medical personnel participating in the study. The study estimated that between 4.0 and 8.7 per 100,000 persons 18 years of age or older have CFS and are under medical care. However, these projections were underestimates and could not be generalized to the U.S. population since the study did not randomly select its sites. A more recent study of the Seattle area has estimated that CFS affects between 75 and 265 people per 100,000 population. This estimate is similar to the prevalence observed in another CDC study conducted in San Francisco, which put the occurrence of CFS-like disease (not clinically diagnosed) at approximately 200 per 100,000 persons. In general, it is estimated that perhaps as many as half a million persons in the United States have a CFS-like condition.
B. Who Gets CFS?
This question is complex and does not have a definitive answer. The CDC four-city surveillance study of CFS identified a population of patients that was 98% Caucasian and 85% female, with an average age at onset of 30 years. More than 80% had advanced education and one-third were from upper income families. However, these data included only patients who were under a physician's care. There is now evidence that CFS affects all racial and ethnic groups and both sexes. The Seattle study found that 59% of the CFS patients were women. Eighty-three percent were Caucasian, an underrepresentation, since over 90% of the patients in the study were white. CDC's San Francisco study found that CFS-like disease was most prevalent among women, among persons with household annual incomes of under $40,000, and among blacks, and was least common among Asians and whites. Adolescents can have CFS, but few studies of adolescents have been published. A recently published CDC study documented that adolescents 12 to 18 years of age had CFS significantly less frequently than adults and did not identify CFS in children under 12 years of age. CFS-like illness has been reported in children under 12 by some investigators, although the symptom pattern varies somewhat from that seen in adults and adolescents. The illness in adolescents has many of the same characteristics as it has in adults. However, it is particularly important that the unique problems of chronically ill adolescents (e.g., family social and health interactions, education, social interactions with peers) be considered as a part of their care. Appropriate dissemination of CFS information to patients, their families, and school authorities is also important. CDC and the National Institutes of Health (NIH) are currently pursuing studies of CFS in children and adolescents.
C. Is CFS Contagious?
There is no evidence to support the view that CFS is a contagious disease. Contagious diseases typically occur in well-defined clusters, otherwise known as outbreaks or epidemics. While some earlier studies, such as investigations of fatiguing illness in Incline Village, Nev., and Punta Gorda, Fla., have been cited as evidence for CFS acting as a contagious illness, they did not rigorously document the occurrence of person-to-person transmission. In addition, none of these studies included patients with clinically evaluated fatigue that fit the CFS case definition; therefore, these clusters of cases cannot be construed as outbreaks of CFS. CDC worked with state health departments to investigate a number of reported outbreaks of fatiguing illness and has yet to confirm a cluster of CFS cases. Implicit in any contagious illness is an infectious cause for the disease.
Carefully designed case-control studies involving rigorously classified CFS patients and controls have found no association between CFS and a large number of human disease agents (see Possible Causes of CFS). Finally, none of the behavioral characteristics typically associated with contagious disease, such as intravenous drug use, exposure to animals, occupational or travel history, or sexual behavior, have been associated with CFS in case-control studies. It therefore seems unlikely that CFS is a transmissible disease. Nevertheless, the lack of evidence for clustering of CFS, the absence of associations between specific behavioral characteristics and CFS, and the failure to detect evidence of infection more commonly in CFS patients than in controls do not rule out the possibility that infectious agents are involved in or reflect the development of this illness. For example, important questions remain to be answered concerning possible reactivation of latent viruses (such as human herpesviruses) and a possible role for infectious agents in some cases of CFS.
D. Clinical Course of CFS
It is vital to understand the clinical course of CFS. This knowledge is required to facilitate communication between physicians and patients, to evaluate possible new treatments, and to address insurance and disability issues. The clinical course of CFS varies considerably among persons who have the disorder; the actual percentage of patients who recover is unknown, and even the definition of what should be considered recovery is subject to debate. Some patients recover to the point that they can resume work and other activities, but continue to experience various or periodic CFS symptoms. Some patients recover completely with time, and some grow progressively worse. CFS often follows a cyclical course, alternating between periods of illness and relative well being. CDC continues to monitor the patients enrolled in the four-city surveillance study; recovery is defined by the patient and may not reflect complete symptom-free recovery. Approximately 50% of patients reported "recovery," and most recovered within the first 5 years after onset of illness. No characteristics were identified that made one patient more likely to recover than another. At illness onset, the most commonly reported CFS symptoms were sore throat, fever, muscle pain, and muscle weakness. As the illness progressed, muscle pain and forgetfulness increased and the reporting of depression decreased.
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Possible Causes of CFS
The cause or causes of CFS remain unknown, despite a vigorous search. While a single cause for CFS may yet be identified, another possibility is that CFS represents a common endpoint of disease resulting from multiple precipitating causes. As such, it should not be assumed that any of the possible causes listed below has been formally excluded, or that these largely unrelated possible causes are mutually exclusive. Conditions that have been proposed to trigger the development of CFS include virus infection or other transient traumatic conditions, stress, and toxins.
A. Infectious Agents
Due in part to its similarity to chronic mononucleosis, CFS was initially thought to be caused by a virus infection, most probably Epstein-Barr virus (EBV). It now seems clear that CFS cannot be caused exclusively by EBV or by any single recognized infectious disease agent. No firm association between infection with any known human pathogen and CFS has been established. CDC's four-city surveillance study found no association between CFS and infection by a wide variety of human pathogens, including EBV, human retroviruses, human herpesvirus 6, enteroviruses, rubella, Candida albicans, and more recently bornaviruses and Mycoplasma. Taken together, these studies suggest that among identified human pathogens, there appears to be no causal relationship for CFS. However, the possibility remains that CFS may have multiple causes leading to a common endpoint, in which case some viruses or other infectious agents might have a contributory role for a subset of CFS cases.
B. Immunology
It has been proposed that CFS may be caused by an immunologic dysfunction, for example inappropriate production of cytokines, such as interleukin-1, or altered capacity of certain immune functions. One thing is certain at this juncture: there are no immune disorders in CFS patients on the scale traditionally associated with disease. Some investigators have observed anti-self antibodies and immune complexes in many CFS patients, both of which are hallmarks of autoimmune disease. However, no associated tissue damage typical of autoimmune disease has been described in patients with CFS. The opportunistic infections or increased risk for cancer observed in persons with immunodeficiency diseases or in immunosuppressed individuals is also not observed in CFS. Several investigators have reported lower numbers of natural killer cells or decreased natural killer cell activity among CFS patients compared with healthy controls, but others have found no differences between patients and controls.
T-cell activation markers have also been reported to have differential expression in groups of CFS patients compared with controls, but again, not all investigators have consistently observed these differences. One intriguing hypothesis is that various triggering events, such as stress or a viral infection, may lead to the chronic expression of cytokines and then to CFS. Administration of some cytokines in therapeutic doses is known to cause fatigue, but no characteristic pattern of chronic cytokine secretion has ever been identified in CFS patients. In addition, some investigators have noted clinical improvement in patients with continued high levels of circulating cytokines; if a causal relationship exists between cytokines and CFS, it is likely to be complex. Finally, several studies have shown that CFS patients are more likely to have a history of allergies than are healthy controls. Allergy could be one predisposing factor for CFS, but it cannot be the only one, since not all CFS patients have it.
C. Hypothalamic-Pituitary Adrenal (HPA) Axis
Multiple laboratory studies have suggested that the central nervous system may have an important role in CFS. Physical or emotional stress, which is commonly reported as a pre-onset condition in CFS patients, activates the hypothalamic-pituitary-adrenal axis, or HPA axis, leading to increased release of cortisol and other hormones. Cortisol and corticotrophin-releasing hormone (CRH), which are also produced during the activation of the HPA axis, influence the immune system and many other body systems. They may also affect several aspects of behavior. Recent studies revealed that CFS patients often produce lower levels of cortisol than do healthy controls. Similar hormonal abnormalities have been observed by others in CFS patients and in persons with related disorders like fibromyalgia. Cortisol suppresses inflammation and cellular immune activation, and reduced levels might relax constraints on inflammatory processes and immune cell activation. As with the immunologic data, the altered cortisol levels noted in CFS cases fall within the accepted range of normal, and only the average between cases and controls allows the distinction to be made. Therefore, cortisol levels cannot be used as a diagnostic marker for an individual with CFS. A placebo-controlled trial, in which 70 CFS patients were randomized to receive either just enough hydrocortisone each day to restore their cortisol levels to normal or placebo pills for 12 weeks, concluded that low levels of cortisol itself are not directly responsible for symptoms of CFS, and that hormonal replacement is not an effective treatment. However, additional research into other aspects of neuroendocrine correlates of CFS is necessary to fully define this important, and largely unexplored, field.
D. Neurally Mediated Hypotension
Rowe and coworkers conducted studies to determine whether disturbances in the autonomic regulation of blood pressure and pulse (neurally mediated hypotension, or NMH) were common in CFS patients. The investigators were alerted to this possibility when they noticed an overlap between their patients with CFS and those who had NMH. NMH can be induced by using tilt table testing, which involves laying the patient horizontally on a table and then tilting the table upright to 70 degrees for 45 minutes while monitoring blood pressure and heart rate. Persons with NMH will develop lowered blood pressure under these conditions, as well as other characteristic symptoms, such as lightheadedness, visual dimming, or a slow response to verbal stimuli. Many CFS patients experience lightheadedness or worsened fatigue when they stand for prolonged periods or when in warm places, such as in a hot shower. These conditions are also known to trigger NMH. One study observed that 96% of adults with a clinical diagnosis of CFS developed hypotension during tilt table testing, compared with 29% of healthy controls. Tilt table testing also provoked characteristic CFS symptoms in the patients. A study (not placebo-controlled) was conducted to determine whether medications effective for the treatment of NMH would benefit CFS patients. A subset of CFS patients reported a striking improvement in symptoms, but not all patients improved. A placebo-controlled trial of NMH medications for CFS patients is now in progress.
F. Nutritional Deficiency
There is no published scientific evidence that CFS is caused by a nutritional deficiency. Many patients do report intolerances for certain substances that may be found in foods or over-the-counter medications, such as alcohol or the artificial sweetener aspartame. While evidence is currently lacking for nutritional defects in CFS patients, it should also be added that a balanced diet can be conducive to better health in general and would be expected to have beneficial effects in any chronic illness.
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Diagnosis of CFS
A. How Physicians Diagnose CFS
If a patient has had 6 or more consecutive months of severe fatigue that is reported to be unrelieved by sufficient bed rest and that is accompanied by nonspecific symptoms, including flu-like symptoms, generalized pain, and memory problems, the physician should further investigate the possibility that the patient may have CFS. The first step in this investigation is obtaining a detailed medical history and performing a complete physical examination of the patient. Initial testing should include a mental status examination, which ordinarily will involve a short discussion in the office or a brief oral test. A standard series of laboratory tests of the patient's blood and urine should be performed to help the physician identify other possible causes of illness. If test results suggest an alternative explanation for the patient's symptoms, additional tests may be performed to confirm that possibility. If no cause for the symptoms is identified, the physician may render a diagnosis of CFS if the other conditions of the case definition are met (see What Is CFS?). A diagnosis of idiopathic chronic fatigue could be made if a patient has been fatigued for 6 months or more, but does not meet the symptom criteria for CFS.
B. Appropriate Tests for Routine Diagnosis of CFS
While the number and type of tests performed may vary from physician to physician, the following tests constitute a typical standard battery to exclude other causes of fatiguing illness: alanine aminotransferase (ALT), albumin, alkaline phosphatase (ALP), blood urea nitrogen (BUN), calcium, complete blood count, creatinine, electrolytes, erythrocyte sedimentation rate (ESR), globulin, glucose, phosphorus, thyroid stimulating hormone (TSH), total protein, transferrin saturation, and urinalysis. Further testing may be required to confirm a diagnosis for illness other than CFS. For example, if a patient has low levels of serum albumin together with an above-normal result for the blood urea nitrogen test, kidney disease would be suspected. The physician may choose to repeat the relevant tests and possibly add new ones aimed specifically at diagnosing kidney disease. If autoimmune disease is suspected on the basis of initial testing and physical examination, the physician may request additional tests, such as for antinuclear antibodies.
C. Psychological/Neuropsychological Testing
In some individuals it may be beneficial to assess the impact of fatiguing illness on certain cognitive or reasoning skills, e.g., concentration, memory, and organization. This may be particularly relevant in children and adolescents, where academic attendance, performance, and specific educational needs should be addressed. Personality assessment may assist in determining coping abilities and whether there is a co-existing affective disorder requiring treatment.
D. Theoretical and Experimental Tests
A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time.
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Careful Consideration of Information about CFS
Because the cause of CFS has not been identified and its effect on the body is not well understood, periodically new unvalidated beliefs about cures and causes of CFS are widely circulated. These may be based on one or more recent reports from the peer-reviewed scientific literature, or they may evolve from the anecdotal remarks of clinicians or scientists at medical meetings. In some cases the origin is obscure. Even work that is of sufficiently high caliber to be published in the scientific literature is not without limitations and design flaws, and all published work needs to be verified and expanded on by others before it can be applied with confidence in clinical situations. With regard to some stories that are currently circulating about CFS: (i) there is no evidence that CFS patients lose their fingerprints; (ii) there is no scientific evidence of any nutritional deficiency in CFS patients; and (iii) suicides of CFS patients have been reported, but the rate of occurrence has not been well-studied and it is not known whether the rate is higher or lower than what would be expected in the general population. It is not practical to address all of the information that circulates or emerges regarding CFS. Simply be advised to be wary of information that points to sure cures or that alludes to pathological damage as a consequence of CFS. Specific questions should be discussed with the patient's physician, local or state health department, CDC, or one of the national patient support organizations.
In Reply to: Chronic Fatigue Syndrome posted by Gloria Watts on April 12, 2002 at 14:41:40:
CALL IT WHAT YOU WILL: CHRONIC FATIGUE SYNDROME; MYALGIC ENCEPHALITIS; OR CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME. IT'S REAL AND IT'S SERIOUS
Is CFS A Physical Or Mental Illness?
Why The Confusion?
By Meryl Nass, MD
January 05, 2002 - What Is chronic fatigue syndrome? Is it a physical disease or a psychiatric disorder? Or is it both physical and emotional? Are people really fatigued, or do they just think they are?
It is really rather odd that after one hundred years of epidemics of chronic fatigue being identified around the world, and with thousands of articles in the published literature, there remains so much controversy about the disorder.
This is probably due to the fact that psychiatrists have published a lot of the literature. Psychiatry is a field that deals with intangibles. For this reason, for many emotional illnesses, you cannot make a psychiatric diagnosis until you have ruled out physical disease. Physicians and psychiatrists agree on this point.
Although you could accuse me of being a partisan in a medical turf war, I think the psychiatrists didn't complete the drill: they didn't rule out organic illness, and they jumped on a diagnosis that, by its nature, is often associated with psychiatric manifestations.
Who can blame them? Most physicians did not know what to make of these patients, and sent them to the psychiatrist for help. The psychiatrists, told by the physicians that nothing was physically wrong, jumped in with a vengeance to diagnose the "mental aberrations" causing the "perception" of fatigue.
The result has been mass confusion within the medical profession regarding the nature of the illness, and a system-wide failure to sensitively and appropriately care for the affected patients.
The research that would help doctors discover how best to treat the disease did not get done, because most doctors thought there was no "real" disease to research. In an effort to alleviate these problems, Congress allotted funds to be spent by the Centers for Disease Control and Prevention (CDC) for CFS research. However, CDC quietly refused to spend it on CFS, and transferred over half the funds into other research programs. When patient advocates discovered this, CDC's director was forced to apologize, and the monies were returned for funding CFS research.
What are the consequences for patients and their families? Very ill patients are victimized as people that only "think" they are sick. Disability carriers establish criteria that make it almost impossible to qualify for benefits. Families lose trust in the patients. Doctors don't want to see these patients, as they don't know if they are really sick, and have no idea how to make them better. Current medical compensation methods (HMOs, capitation) ensure that doctors who treat complex, time-intensive patients lose money in the process. Only wealthy patients, in general, can afford the specialized care offered by CFS doctors, who are themselves scrambling to find answers.
**
What happens when doctors identify a group of patients with similar, but inexplicable symptoms? A syndrome is born, defined by its symptoms, until a better understanding of its origin develops.
Because initially there were no definite findings on lab tests or physical examination that established the diagnosis of CFS, sets of symptom criteria were developed for use in making the diagnosis.
The first well-known set of consensus diagnostic criteria were developed by Gary P. Holmes at CDC in 1988, whose group also selected the name "chronic fatigue syndrome." His paper, which named and defined the syndrome, was published in the Annals of Internal Medicine. These criteria were fairly restrictive, and excluded many with the syndrome. Later, in 1994, Keiji Fukuda's group at CDC revised the criteria, broadening the definition.
More recently, Dr. Pascale De Becker of the Free University of Brussels, Belgium, has strengthened the selection criteria for CFS. I believe she has created the best symptom list yet for this illness. Because there is no simple definition of CFS, I am going to list her twenty cardinal features, which provide a flavor of the illness as well as an indication of how broad its effects can be. Her list includes the following:
1) Fatigue
2) Swollen or tender lymph nodes
3) Sore throats
4) Muscle weakness
5) Recurring flu-like symptoms
6) Post-exertion fatigue (inability to exercise after performing an initial exercise)
7) Muscle pain
8) Memory disturbances
9) Non-restorative sleep
10) Hot flashes
11) Attention deficit
12) Newly developed sensitivities to food and drugs
13) Difficulty with word-finding
14) Urinary frequency
15) Cold extremities
16) Photophobia (poor tolerance for bright lights)
17) Muscle tremors
18) Lightheadedness
19) Shortness of breath with mild exercise, and
20) Gastrointestinal disturbance
Dr. Anthony Komaroff, a well-known CFS expert at Harvard, has compiled much of the data that show there are, in fact, many definite physical abnormalities in CFS patients. Other scientists have also written on this subject. However, most practicing doctors are not yet aware of these findings. The popular press has been slow to publish on this topic, and the psychiatric researchers studying CFS seem to have missed these revelations as well. The information is beginning to trickle out, however.
Patients with CFS "look" normal, and their routine laboratory tests are normal as well. (More specialized tests are not.) Medical textbooks have been slow to catch on to the fact that you have to dig deeper in order to find the abnormalities. However, the following are now well-established, measurable abnormalities that can be found in many CFS patients:
1) low blood volumes
2) abnormal autonomic nervous system function
3) abnormal blood flow in SPECT studies of brain perfusion
4) cognitive deficits, such as slowed information processing, decreased memory and attention, and impaired handling of multiple tasks simultaneously
5) cardiac rhythm disturbances (possibly related to #2 above)
6) impaired endocrine function, with reduced baseline secretion and reduced responses to stimulation by releasing factors, as well as recently reported smaller size of the adrenal glands
7) reduced exercise performance, following a period of earlier exercise
8) abnormal gastrointestinal motility and flora
9) elevated plasma levels of immune complexes and immunoglobulin G
We've established that CFS patients share a common set of symptoms, and some specialized laboratory, radiologic and cognitive abnormalities. It is a real disease, and in some cases can be extremely severe, leading to disability and occasionally death. But what causes it? How common is it? Is it contagious?
It does not seem to be contagious, for the most part. However, it might be contagious in certain subsets, such as Gulf War veterans. Their illness (Gulf War Syndrome or GWS) strongly overlaps with CFS, although some veterans have additional problems. Some veterans improve markedly on antibiotics, suggesting the presence of chronic infections. Although many Gulf War veterans have reported that spouses and children have developed similar symptoms (usually one year or more after the veteran became ill), there have been no published studies of this illness in family members, so the presence of a transmissible agent remains speculative at this point.
Estimates of prevalence of CFS in the general population range from 0.1% to 1.5%. Since there exist varying criteria for the diagnosis, prevalence rates vary between studies. However, it is likely that at least 500,000 people in the United States are affected.
How do people get CFS? What causes it? That is the $64,000 question. Chronic fatigue syndrome can develop suddenly or gradually, and a wide range of events and illnesses have been associated with it. No one microorganism or event explains a majority of cases. Instead of being able to say a particular infection caused CFS, one is only able to say that CFS developed after a particular infection, or after an accident or other event.
People may develop CFS following infection with Borrelia Burgdorferi, the causative agent in Lyme Disease, or following Q Fever, a rickettsial infection. It may follow mononucleosis (Epstein-Barr virus infection), and has been associated with mycoplasma and Human Herpes Virus 6 infection. It may develop following placement of breast implants or other types of silicone implants, following poisoning with ciguatera (fish) toxin and other toxins, or following vaccination (particularly with anthrax vaccine or hepatitis B vaccine).
Gulf War veterans are frequent sufferers. A neuropathy epidemic in Cuba in 1993, which is believed to have been due to a combination of nutritional deficiency and cyanide toxicity, resulted in an illness with many similar symptoms. Patients with coeliac disease (gluten intolerance) probably have a genetic predisposition to CFS, and restricting their diet could result in a cure for these patients. Many patients with fibromyalgia also meet the criteria for CFS, and in my opinion the two syndromes probably have as yet unknown, but similar or identical underlying mechanisms. Patients with multiple chemical sensitivity also often have CFS. In fact, all the illnesses listed here probably share common physiologic mechanisms, which are not yet understood.
How is CFS treated? The best results seem to come from aggressive treatment of symptoms, since only occasionally can a specific cause be identified and treated effectively. Symptom treatment may mean that physicians are not treating the disorder, per se, but rather optimizing other aspects of the patient's health, which enables their body to cope better with the disorder.
Some treatments include tricyclic or other antidepressants, which can improve the sleep disorder, and alleviate some of the pain experienced by patients. Digestive enzymes and probiotics normalize gastrointestinal flora and improve motility, and "elimination" diets can help identify foods that aggravate a variety of symptoms. Other treatments might include vitamins and food supplements, electrolytes, hormones, antibiotics, antivirals, blood thinners for those with abnormal clotting tendencies, increased salt and fluids, and attempts at removing toxins from the body.
How effective are these methods? For some patients they work well, but for others none of these approaches solves the problem.
The societal cost of CFS is enormous. Is there more that can be done?
First, societal acknowledgement that CFS is a "real" disorder, would go a long way to removing the stigma associated with the disease.
Second, research into the basic disease mechanisms associated with CFS, such as the well-documented ion channel abnormalities and inadequate ATP production, is desperately needed. The families of GWS patients need to be studied. There are many other promising areas of research for which, so far, no funding has been available. This is a shame, for answering questions in these areas will yield benefits that will spill over to a variety of other illnesses which are associated with fatigue.
Third, insurance companies should be required to treat CFS like any other chronic disease. They should pay for treatments that are effective, and provide disability payments for patients who meet reasonable disability criteria, without arbitrary time limits for compensation. CDC says only 31% of CFS patients become well in five years, but some insurers stop disability payments for CFS after two years.
Fourth, accurate education for health professionals regarding CFS is needed.
Fifth, treatment trials of a large variety of commonly used, but in some cases "alternative," treatments are desperately needed, so health professionals will learn what is really effective for this very frustrating illness.
Recommended Reading
Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A.
The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group.
Ann Intern Med. 1994 Dec 15; 121(12): 953-9.
Holmes, GP, Kaplan JE, Gantz NM, Komaroff AL, Schonberger LB, Strauss SE, Jones JF, Dubois RE, Cunningham-Rundles C, Pahwa S, et. al.
Chronic fatigue syndrome: a working case definition.
Ann Intern Med. 1988 Mar; 108(3): 387-9.
Centers for Disease Control and Prevention. Chronic Fatigue Syndrome website. "October 13, 1999. Meeting of CFS Patient Advocacy Group Representatives. Summary Report." Accessed January 1, 2002.
Johnson H. Osler's Web: Inside the labyrinth of the chronic fatigue syndrome epidemic. Crown publishers, New York, NY. 1996.
Hyde BM et al. The Clinical and Scientific Basis of Myalgic Encephalitis/Chronic Fatigue Syndrome. Nightingale Research Foundation, Ottawa, Ontario and Ogdensburg, NY. 1992.
Teitelbaum J. From Fatigued to Fantastic. Penguin Putnam Inc. New York, 2001.
In Reply to: Re: Chronic Fatigue Syndrome - MYALGIC ENCEPHALITIS; posted by CFS on April 14, 2002 at 20:31:47:
Thanks for the article; I sent it to a friend with CFS.
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