No one should be alone in this. We can help. View New Content

[Forum Admin]

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.

 


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.


Top
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.




Top
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.




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.

[Forum Admin]

r. Paul Cheney Discusses the Benefits of Klonopin
by Carol Sieverling
ImmuneSupport.com

10-12-2001

Editor’s Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinic’s Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.

Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.

Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep – slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."

In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." It’s as if our brain’s "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.

Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy person’s threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.

Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually **** neurons that fire excessively. He states that brain cell loss can result if this condition isn’t addressed.

How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney’s most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, you’ll experience greater clarity and think better. If the daytime dose is too high, you’ll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.

Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded(www.ImmuneSupport.com sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.

Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients can’t tolerate more than half a cc.

On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine) 2. Histamine blockers (Doxepin Elixir) Under the category "GABA Agonists" (increases GABA) Cheney lists: 3. Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root

Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava “daytime only”; and valerian “nighttime only.” The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.

Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.

MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD.

When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics aren’t exactly identical to the original products, and with most drugs the slight variations don’t matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.

MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE.

Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

Dr. Cheney said a case might be made that Klonopin is habituating. It’s true that it can’t be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem – excitatory neurotoxicity. It’s prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It’s like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it’s not because the drug is addicting, and it’s not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That’s the havoc we hear about that is mistakenly called withdrawal."

MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.

Dr. Cheney said that he honestly doesn’t understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. It’s not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.

Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose I’m wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I’m wrong about your need for Klonopin? I’m absolutely sure I’m right, but what’s the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer’s Disease. Alzheimer’s Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it’s believed that Klonopin didn’t actually stop Alzheimer’s. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won’t get Alzheimer’s. You’ll die of something else first."

The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it’s not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn’t an option for most of us, so we need to find the maximum dose that doesn’t make us drowsy.

Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they can’t stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.

Though it can’t stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, you’ll have more of your brain left."
Other related articles
Caring for Patients with Chronic Fatigue Syndrome

Dr. Paul Cheney on Growth Hormone, MRS Scans, and Undenatured Whey for Chronic Fatigue Syndrome
SOURCE:- © 2006 ProHealth, Inc.

[Lindsay]

An Article I had searched for that you may find of Interest that I found on the web after having had to have a blood test taken for B-12 and Folic Acid levels .

Simplifying nutritional support in CFS/Fibromyalgia - Highly Effective Treatments for Pain and Fatigue
Jacob Teitelbaum

In last month's issue we talked about the causes of widespread nutritional deficiencies in Chronic Fatigue Syndrome and Fibromyalgia CFS/FMS). These included poor quality diet and digestion (which can be helped dramatically with plant-based digestive enzymes -- e.g. Similase by PhytoPharmica), bowel infections, and increased nutritional needs secondary to the illnesses. This has resulted in an immense number of recommendations for different nutrients, each of which have been purported to be critical for people getting better. This has caused patients to become very confused and overwhelmed with the vast number of supplements that they're told they need to take.

Because of this, we have worked on a simplified approach that makes it easier for most people to get the nutritional support they need -- both easily and effectively. I would like to begin, however, by reviewing the importance of long-term nutritional support with key nutrients in CFS (and for most people). In the next issue, I will review the nutrients that only need to be taken for three to nine months while the body is in its "Repair Phase."

Why are vitamins and minerals so important in CFS/Fibromyalgia?

Dr. Janet Travell, White House physician for presidents John F. Kennedy and Lyndon B. Johnson and professor emeritus of Internal Medicine at George Washington University, co-wrote Myofascial Pain and Dysfunction: The Trigger Point Manual, which is acknowledged as the authoritative work on muscle problems. In one chapter alone, Dr. Travell and coauthor Dr. David Simons reference 317 studies showing that problems such as hormonal, vitamin, and mineral deficiencies can contribute to pain and muscle disorders. Numerous other studies have also shown that adequate amounts of vitamins and minerals, especially folic acid, zinc, and selenium, are critical for proper immune function. Zinc levels in particular have been found to be quite low in people with CFIDS/FMS (and also in AIDS).

Every vitamin and nutritional mineral is very important in some way to health. If the patient is low in any of a number of vitamins and minerals, their fibromyalgia simply will not subside. B vitamins, for example, are the backbone of energy production and it is important that patients with CFS/fibromyalgia get at least 50 mg of most of these, plus 800 micrograms of folic acid and 500 micrograms of vitamin B12. These can have a dramatic effect on your patients' well being.

Why such high levels of Vitamin B12?

Vitamin B12 is a key nutrient in CFS. Technically, a patient's B12 level is normal if it is over 208 pg/dL. Studies, however, have shown that people can suffer significant nerve and brain dysfunction from B12 deficiency, even if their levels are as high as 300 pg/dL. In addition, a recent study using the respected Framingham database showed that metabolic signs of B12 deficiency occur even with levels over 500 pg/dL.

Why are the "normal" levels set so low? In part, the normal values were initially set according to what prevents anemia. This is problematic, however, because the brain and nervous system's needs for vitamin B12 are often much higher than those of the bone marrow. Also, the medical establishment has greatly enjoyed poking fun at the old-time and holistic doctors who gave vitamin B12 shots for fatigue. The use of B12 shots, despite "normal" levels, is considered almost a symbol of unscientific, archaic medicine. As noted in an editorial in The New England Journal of Medicine, however, current findings suggest that those old-time doctors may have been right. I suspect, though, that our modern medical establishment will be a little slow to eat crow.

Recent research shows that despite having low normal B12 levels in the blood, CFS patients often have very deficient (and sometimes absent) B12 levels in their brains! This suggests that, because of the metabolic problems present in CFS/FMS, patients may need a very high B12 level in their blood to get adequate levels past the blood-brain barrier and into the brain, where B12 is needed. In addition, vitamin B12 helps to reduce excessive levels of nitric oxide, a neurotransmitter that can be too high in CFS/FMS and that can easily contribute to symptoms. More and more, research studies are supporting what holistic doctors who effectively treat CFS/FMS using B12 shots have said for years!

It is no surprise then, that when their other problems are also treated, many people respond dramatically to B12 injections. If a patient's B12 level is under 540 pg/ml, I treat with a 1-cc (3,000-microgram) injection of hydroxycobalamin (from a compounding pharmacy; e.g. Cape Drug at 410-7573522 or the Apothecary at 800-869-9159 are two excellent ones), one to five times a week, for fifteen injections. These shots are very safe and fairly inexpensive. If a patient feels worse when the injections are stopped, I resume giving the shots, usually every one to five weeks (but as often as three to four times a week in some cases) for an extended period of time. Most people, however, can maintain the benefit after fifteen injections by taking the 500 mcg/day of oral B12 which is present in the Daily Energy Enfusion vitamin powder.

Magnesium

In addition to high dose, balanced B vitamins, I also urge my CFS/Fibromyalgia patients to take a magnesium supplement. Magnesium is involved in hundreds of different body functions, but is routinely low in the American diet as a result of food processing. The average American diet supplies less than 300 milligrams of magnesium per day, while the average Asian diet supplies over 600 milligrams per day. I generally recommend taking 200 milligrams of magnesium a day. Magnesium absorption is very difficult, which is why I like to use the glycinate forms. Because of the bowel infections in these syndromes, some patients may get diarrhea and cramps initially at this dose (although this is less common with the glycinate form). If this is a problem, they can simply lower the dose initially and then gradually increase it. Adding calcium to the magnesium can lessen the diarrhea, but also decreases the magnesium's absorption.

If the patient is magnesium-deficient, their muscles will stay in spasm and the fibromyalgia will not resolve. This is but one of the reasons why taking magnesium is so critical. In addition, magnesium is important in energy production. Adding 900 milligrams of malic acid can dramatically help energy as well. Most magnesium is intracellular, making blood tests an unreliable measure. Keep in mind that magnesium blood tests do not drop below normal until severe magnesium depletion occurs and everyone with CFS/FMS, fatigne, or muscle achiness should take magnesium. In fact, as epidemiological evidence suggests that low magnesium intake is associated with increased heart attack deaths, I recommend magnesium supplementation for anyone on the standard Western diet. An exception is if kidney failure with a blood creatinine level over 1.6 milligrams per deciliter (mg/dL) is present -- very rare in CFS/FMS.

Other vitamins and minerals

Many other nutrients are also critical. VitaminAis necessary for proper mucosal immunity. This is very important, as CFS patients often have chronic respiratory infections. Unfortunately, too much vitamin A (over 8000 units a day) can result in birth defects and therefore more is not better. Betacarotene does not cause birth defects, but may not have the same effect as the vitamin A.

Vitamin Gin optimum levels is critical for adequate immune and adrenal function. We'll speak more about adrenal problems in future articles. Vitamin D deficiency has also been implicated in CFS and is important not just for bone strength but for proper immune function as well. A recent study suggests that vitamin E deficiency is also present in CFS.

Minerals are also critical. For example, selenium and iodine are critical for proper thyroid function and evidence suggests that iodine and iodide intake in the American population is not anywhere near optimal. Japanese women often get approximately 7500 mcg of iodine/iodide a day from seaweed in their diet. It is suggested that iodine and iodide deficiency may contribute to an increase in fibrocystic breast disease as well as sub-optimal thyroid function.

As noted above, zinc is critical for proper immune function as well as wound healing. Chronic infections appear to cause increased utilization of zinc, resulting in marked zinc losses. This has been demonstrated in MDS patients and has been found in fibromyalgia as well. Zinc, however, has a narrow therapeutic optimum range with greater than 22 mg/day worsening HDL cholesterol levels.

Copper is important for proper superoxide dismutase function. Excess copper is pro-oxidative however, and has also been implicated as a possible aggravating factor in CFS. Because of this, it is prudent to not get too much copper in one's supplement. I recommend one-half mg a day.

Chromium is needed for proper insulin sensitivity -- 200 mcg/ day can decrease the hypoglycemia that is commonly seen from inadequate adrenal function in CFS.

Amino acids

Amino acid deficiencies are common in CFS and treatment with these has been shown to be beneficial. There are many critical roles that these amino acids play.

Tryptophan is critical for production of serotonin. Serotonin deficiency has been suggested in CFS and may be one of the reasons that substance P levels (the pain transmitting neurotransmitter) are 300% higher in fibromyalgia patients. Low serotonin may also aggravate the already marked sleep dysfunction and neurally mediated hypotension (NMH) present in these syndromes.

Tyrosine is necessary for dopamine and norepinephrine production. Low dopamine may contribute to the high prevalence of restless leg syndrome and both of these deficiencies can contribute to the fatigue and cognitive dysfunction.

Other amino acids are also critical. I suspect that one of the key underlying root causes of CFS is glutathione deficiency. Glutathione is a critical antioxidant in fighting chronic infections as it prevents destruction of natural killer cells. Research has shown that the amino acids that make up glutathione (cysteine, lysine, and glutamine) are markedly deficient in post viral fatigue states such as CFS. These deficiencies are therefore likely to be critical. To give a few more examples, serine 500 milligrams/day by itself has been shown to significantly help with CFS symptoms. Lysine can suppress some herpes viruses and also helps in the production of carnitine, which is another critical deficiency in CFS. Carnitine deficiency can then contribute to the average 32-pound weight gain seen in CFS/FMS, while preventing proper mitochondrial function.

From this discussion you can see how critical it is to get broad-spectrum nutritional support in these syndromes. To simplify this, I have created a good tasting vitamin powder that allows people to get the 50 key nutrients they need by taking one capsule and one good tasting drink a day. This replaces 25 supplement tablets daily. The End Fatigue "Daily Energy Enfusion Powder" can markedly increase energy and decrease pain. It is available from PhytoPharmica (800-931-1709). As noted before, 100% of my royalty for all products I make goes to charity, and I do not take money from any company whose products I recommend. The effect on how people feel has been likened to the increasing brightness that occurs when you turn up a dimmer switch. Because the product is a powder, it also allows patients to adjust their dose. Although one scoop /day supplies optimum therapeutic nutrition, patients may want to start with half a scoop/day or a quarter scoop twice/day if they are sensitive or have diarrhea. They can then i ncrease to the dose that feels best. Some people like the convenience of taking it once a day and others prefer to divide their nutritional supplements through the day. Either way is okay. Patients take the one capsule of B-complex that comes with the powder in the morning, as the level in the capsule is optimum for most people. Additional B-complex capsules can also be obtained separately (Daily Energy B Complex). This new product was made to supply outstanding, overall, lifetime nutritional support for most people (not only CFS patients), tastes great, helps people feel a lot better, and beats the heck out of patients having to take 25 nutritional supplement tablets a day! I suggest you try it yourself.
SOURCE:-
Jacob Teitelbaum MD is a board-certified internist and director of the Annapolis (Maryland) Research Center for Effective CFS/Fibromyalgia Therapies. Having suffered with and overcome these illnesses in 1975, he spent the next twenty-seven years creating, researching, and teaching about effective therapies. He is senior author of the recently published landmark study "effective Treatment of CFS and Fibromyalgia -- A Placebo Controlled Study" (which can also be found on his web site). Dr. Teitelbaum lectures internationally and gives two-day practitioner workshops. He is also the author of the best-selling book From Fatigued to Fantastic! His newest book is Three Steps to Happiness: Healing through Joy (Deva Press 2003). For more information visit Dr. Teitelbaum's web site at www.endfatigue.com.

COPYRIGHT 2003 The Townsend Letter Group
COPYRIGHT 2003 Gale Group

*Depression Forums does not endorse, approve, recommend, or certify any information, specific treatment, medication, service, or professional presented or mentioned IN THIS POST.

[Lindsay]

Chronic Fatigue Syndrome > Awareness Campaign > PSAs >
Television PSA
"Missing My Life"
30 second TV Public Service Announcement

Mission / Goals

The first national public awareness campaign on chronic fatigue syndrome is designed to educate the American public and health care professionals about who is at risk for CFS, the symptoms of the illness, treatment and management options, the importance of seeking diagnosis and treatment, and the impact of the illness on both patients and family members.

The Department of Health and Human Services (HHS) and the Centers for Disease Control and Prevention (CDC) are committed to improving awareness about chronic fatigue syndrome and provide up-to-date educational resources on the illness. CFS is a public health concern because:

* CFS affects more than 1 million Americans.
* Less than 20% of Americans with CFS have been diagnosed.
* CFS can be as debilitating as multiple sclerosis, lupus, rheumatoid arthritis and similar chronic conditions.
* The annual economic impact of CFS in the United States is $9.1 billion in lost wages and earnings alone, not including health care costs or disability benefits.

It’s important for people to recognize the symptoms of CFS and, if you or a loved one has those symptoms… Get informed. Get diagnosed. Get help.

http://www.cdc.gov/cfs/mission.htm

 MissingMyLife.pdf   31.25K   235 downloads



http://www.cdc.gov/c...singMyLife.rmvb

http://www.cdc.gov/c...ssingMyLife.mov




Page last modified on May 11, 2006

[alley7]

Hi every one, hope today is a good day for all.
I suffer from both CFS and FS. the CFS is so bad that, some days I can't hardly hold my eyes open at all, and it's like my brain won't function, I can lay on the couch and be dieing of thirst, but not have the stregth to walk 10 steps to the kitchen. I miss taking my pills some times, because some of the pain meds I have to eat with, but can't get the energy to go eat. I have always been a clean person and I some times now go 2 days w/ no shower and my house is a mess most the time. I hate it, I'm either in extreme pain or so tired I can't move or both.

[MissJustice]

Hi every one, hope today is a good day for all.
I suffer from both CFS and FS. the CFS is so bad that, some days I can't hardly hold my eyes open at all, and it's like my brain won't function, I can lay on the couch and be dieing of thirst, but not have the stregth to walk 10 steps to the kitchen. I miss taking my pills some times, because some of the pain meds I have to eat with, but can't get the energy to go eat. I have always been a clean person and I some times now go 2 days w/ no shower :no: and my house is a mess most the time. I hate it, I'm either in extreme pain or so tired I can't move or both.

Hi

I have suffered from CFS for just over 4 years. For the first 2 years it was very bad. Then I got into healthy eating and gradual exercise which is now used as a treatment here in the UK, which I didn't know about at the time (ironically the pioneering specialist who started a gradual exercise therapy program with CFS sufferers in the UK is based where I was doing my nusre training at the time I was diagnosed with CFS!) I used my instinct to treat myself and cut out additives, caffiene, alcohol etc from my diet. This was before I researched online into how to treat my condition. I got better.

After 2 years I thought I was almost cured but now realise that it is a gradual process of being healed and setbacks such as stress (for me) can send you back to days of fatigue. My periods of fatigue aren't quite as bad now though and they don't last as long.

Just lately though I have been having menstrual problems. I have been having bad PMS and when I have my period I have been in pain and feeling nauseous with muscular spasms and feeling hot. I had given up dairy and wondered if anyone knew if this is the cause? I've been taking extra magnesium, B complex and evening primrose oil to see if that helps.

Does anyone have any suggestions for balancing hormonal levels?

Also I go through brief depressive episodes brought on by triggers I regard as stressful. Then my CFS gets worse. How can I redress the damage I do when cortisol levels are raised through stress. I take siberian ginseng. Anything else? Is St. John's Wort any good for this?

I can write this today because my brain is clearer than usual-hate the brain fog thing and the way people don't understand it! Any info about this to show to others would be appreciated.

Big thanks in advance. Hi to all CFs sufferers reading this- you're not alone :-)

[Ajumbledmess]

This may sound silly but I firs heard of this on an episode of the Golden Girls. I hope that you will find some relief. The pain meds make u more tied dont they?

[whoppiking]

Hi every one, hope today is a good day for all.
I suffer from both CFS and FS. the CFS is so bad that, some days I can't hardly hold my eyes open at all, and it's like my brain won't function, I can lay on the couch and be dieing of thirst, but not have the stregth to walk 10 steps to the kitchen. I miss taking my pills some times, because some of the pain meds I have to eat with, but can't get the energy to go eat. I have always been a clean person and I some times now go 2 days w/ no shower and my house is a mess most the time. I hate it, I'm either in extreme pain or so tired I can't move or both.

hi i have suffered with cfs for over 15 years but took at least 8 years before i could make anyone understand.i now can manage the symptoms by when practical resting up when bad days are coming you get to no the signs.but ythis isnt always possible.on the days like you describe i just give in to the pain and retreat to my bed and rest its a long slow process and i no i will never be free but at least i manage it better.the hardest thing is accepting that its happened and then trying to deal with it.
anyway hi to all fellow sufferers and hope you are having good days.
david

[Jkm]

I'm just wondering if anyone who has CFS also had Mono as a teen? I read the other day that they think there is a connection between the two.

Jackie

[Tanha]

I was just diagnosed with CFS and was looking for others with the same problem. I'm so glad I have this forum because I would feel so alone without it! Anyway I had mono last year, twice somehow back to back. I feel horrible at the moment and I was just wondering what others have done to make themselves feel better if anything. *hugs*

[illun]

You should look into adrenal fatigue syndrome, it has been closely related to CFS. It might cure you in a matter of months.

Look at my thyroid and adrenal fatigue sydrome posts in this forum. Go to the website listed in the thyroid post and you might have some hope.

[Lise]

I have chronic fatigue. I have to nap every afternoon or I fall apart later in the day. I can only work in short spurts and then I need to rest. Not many people seem to bother to understand this so most people have just labeled me as lazy.

When I'm not so tired I will read all of the information in here.

[Lise]

Has anyone gone along to a support group? I have found one in my city and am going to go along next year. I hope it will help me to meet other people with the same condition.