Fibromyalgia ... from possible diagnosis of fibro to life beyond...
Saturday, October 22, 2005
Thursday, October 20, 2005
Treatment of Fibromyalgia Open Trial of PindololShows improvement in Tender Point Count Open Trial of Pindolol in the Treatment of Fibromyalgia: "Open Trial of Pindolol in the Treatment of Fibromyalgia ImmuneSupport.com
BACKGROUND: Evidence suggests that fibromyalgia is related to both chronic sympathetic hyperactivity and decreased levels of serotonin.
OBJECTIVE: To examine the efficacy of pindolol, a mixed serotonin (5-HT)1A presynaptic autoreceptor/beta-adrenergic receptor antagonist, in the treatment of fibromyalgia.
RESULTS: There was significant improvement in primary outcome measures, including Tender Point Count ..
depression and anxiety scores did not change significantly among women who completed the study, while the impact on cardiovascular parameters was clinically insignificant.
CONCLUSIONS: While the current results are encouraging, further studies are needed to determine whether pindolol might be effective in the treatment of fibromyalgia. Limitations of this study include small group size and lack of placebo control."
Finally some quality sleep...Allegron working?Have been on Nortriptyline 12 days now and managed to sleep till 6am today albeit still with frequent waking. I admit I was knackered yesterday but previously that would make no difference at all, I could not even sleep off a hangover ( very infrequent I have those now as I drink far less...)
So I am looking forward to increasing the dose and hoping for better sleep and less fibromyalgia symptoms. The aches and pains have been low grade and fibro fog present but just about bearable although I needed the lift from a real coffee to get me through 2 hours withe girls last evening then collapsed into bed after my dinner.
Wednesday, October 19, 2005
ME CFS & Fibromyalgia Research Notices, Articles and PostsThe best site I have found for recent in depth research into fibromyalgia, chronic fatigue and related syndromes
ME/CFS & Fibromyalgia Research Notices, Co-Cure Articles and Posts
Includes a meta analysis: "An Analysis of CFS Research Groups. [These are the men and women on the front lines of CFS research.]"
Trends In CFS Research A Laymen’s Guide to CFS Research
Tuesday, October 18, 2005
Marketing updateKeywords that are doing particularly well include:
symptoms of fibromyalgia
Gotta go, off for psychotherapy though don't feel as if I am getting very far in getting rid of my baggage.
The new tablets are due to be doubled in dose this Friday...hoping for better sleep...
Saturday, October 08, 2005
Fibromyalgia Amitriptyline - Mestinon for severe side effectsFibromyalgia by David A. Nye, M.D. "Amitriptyline frequently produces mild side effects. An increase in sleepiness or dizziness should be expected when it is first taken. Starting at a low dose taken an hour or more before bedtime and increasing gradually helps minimize these initial side effects. Those patients who notice an initial stimulant effect of amitriptyline, perhaps with a rapid heartbeat, should take it earlier in the evening, so that this effect has given way to sedation by bedtime. By the end of two weeks, most patients are noticing that the side effects are settling down and the medication is beginning to help their fibromyalgia symptoms.
Almost everyone on enough amitriptyline to help fibromyalgia gets a dry mouth and often some constipation. If these side effects are severe, another medication called Mestinon can be added to block them, generally with no other side effects of its own. Amitriptyline may cause a craving for sweets, although usually not for calories in other forms. I recommend you avoid sweets entirely while on amitriptyline to avoid weight gain.
Daily, vigorous exercise is also important in the treatment of fibromyalgia. Exercise is more effective if done in the evening. Fifteen to thirty minutes of exercise is usually sufficient. The exercise seems not to work through conditioning of muscles but rather through a direct, possibly hormonal effect on sleep. Patients who have been exercising regularly and then miss a day usually find that their fibromyalgia symptoms are significantly worse the next day.
The kind of exercise is unimportant as long as it is vigorous. Just make sure to pick something that doesn't increase your pain. The exercise should get your heart rate up and and make you get a little short of breath. Less than vigorous exercise provides no benefit and may actually make you feel worse. Be sure to warm up adequately with some stretches before starting to exercise to avoid injury.
Even with good results from treatment, brief relapses are common, often caused by temporary sleep disturbances, such as staying up as little as one hour late one evening, or skipping exercise. You will do best if you "give in to it" when this happens and try to get extra rest."
Started on Amitriptyline for FibromyalgiaSeem to have turned a corner with my GP, now appears to be onside with me in trying to treat me for fibromyalgia. She dropped the name of the rheumatologist at the local hospital who specialises in fibromyalgia into the consultation and has prescribed Amitriptyline
as it is considered one of the most effective treatments for fibro as it acts to give deep sleep and helps with the pain...Started on 10mg, have to double dose after two weeks then go back to review.....
Also had DSS medical yesterday, the doctor also seemed to be onside...advising me to keep up my efforts, daily goals, exercise etc and to take jacuzzis or saunas to make sure muscles are warm and reduce pain. He also reckoned I look a lot younger than 47!
Fibromyalgia by David A. Nye, M.D. "Patients with fibromyalgia often report subjectively shallow sleep as well as an increase in fibromyalgia symptoms after disturbed sleep (Campbell 1983). In 1973, Hauri and Hawkins reported abnormal amounts of electroencephalographic alpha activity during deep sleep in patients with symptoms of fibromyalgia (Hauri 1973). Moldofsky et al. reproduced these findings and were able to induce fibromyalgia symptoms in normal volunteers by depriving them of deep sleep (Moldofsky 1975). They noted however that sleep deprivation did not induce symptoms of fibromyalgia in subjects who exercised. Subsequent trials have confirmed the value of aerobic exercise in the treatment of fibromyalgia (McCain 1988). Exercise increases time spent in deep sleep (Hobson 1968), perhaps the the mechanism for its theraputic efficacy.
The presence of considerable symptom overlap in fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome and the efficacy in all of low doses of amitriptyline has led to speculation that they may be different facets of the same underlying, as yet unknown disease process, possibly a viral infection (Goldenberg 1990, Yunus 1989). Although no specific inheritance pattern has been identified, an increased incidence in relatives of affected patients has been noted (Pellegrino 1989).
Most patients with fibromyalgia respond favorably to low doses of amitriptyline, vigorous exercise, and maintenence of a regular schedule of adequate amounts of sleep. On this regimen, 30 (83%) of the last 36 patients I have seen with fibromyalgia have had substantial improvement.
Amitriptyline is more effective than anti-inflamatory medications or other anti-depressants in the treatment of fibromyalgia, and appears to work through its effect on deep sleep (Goldenberg 1986). It should be started at 5 mgs. an hour or so before bedtime. The dose should be increased by 5-10 mgs. every 4-7 days to maximum relief of symptoms without unacceptable side effects. In the 30 patients mentioned above, the best dose ranged from 2.5 to 300 mgs. per day but generally was between 30 and 60 mgs. per day. The few patients who experience an initial stimulant effect and tachycardia from amitriptyline should take it earlier in the evening so that this effect has given way to sedation by the patient's usual bedtime. The dose usually needs to be pushed to the point that it causes a significant and continuous dry mouth. When dry mouth and constipation are sufficiently bothersome, pyridostigmine may be used to block these and other peripheral anticholinergic side effects. A craving for sweets is a common side effect of amitriptyline so I recommend that patients taking amitriptyline avoid sweets entirely to avoid weight gain.
Daily, vigorous, low-impact aerobic exercise has also been shown to have a beneficial effect on fibromyalgia symptoms (McCain 1988). It appears to be more effective if done later in the day. The kind of exercise does not seem to matter as long as it gets the heart rate into the aerobic range. Aerobic dance videotapes can be used at home at a convenient time every day, are paced, and provide warm-up exercises that can help prevent injury. The patient should choose a type of exercise that does not aggrevate their pain. If the pain is worst in the back and legs, for example, exercise just the arms.
Getting adequate sleep is essential. Fibromyalgia symptoms commonly appear during times of sleep disruption (12) such as may be brought on by stress, pain, starting shift work, or having to get up to attend to young children. At times just re-establishing a regular sleep schedule may be enough to relieve symptoms.
Education, frequent follow-up visits, temporary dose reductions, and reassurance help to get patients over the initial side effects of amitriptyline, the most bothersome of which are usually fatigue and dizziness. It may be difficult to convince patients to get adequate exercise because of their fatigue and because it may initially increase the aching. It may take two weeks or so before the beneficial effects of the amitriptyline and exercise outweigh their side effects. The physician should check on the amount and type of exercise and sleep at return visits and reinforce their importance. Patients should be warned that despite optimum treatment and good initial results, brief relapses are common, often caused by temporary sleep disturbances. The patient will do best if she "gives in to it" and tries to get extra rest during a relapse.
In summary, fibromyalgia is a common, chronic, often disabling disorder of unknown etiology associated with disordered deep sleep and probably abnormalities involving serotonin or other neurotransmitters. Most patients can be helped with a combination of amitriptyline, exercise, and maintenence of a regular sleep schedule. Think of this condition in any patient with a complaint of aching and look for associated symptoms and tender points to confirm the diagnosis.
Table 1: Associated signs and symptoms (Wolfe 1990).
widespread pain -- 97.6% of patients
tenderness in tender points -- 90.1
fatigue -- 81.4
morning stiffness -- 77.0
sleep disturbance -- 74.6
paresthesias -- 62.8
headache -- 52.8
anxiety -- 47.8
dysmenorrhea history -- 40.6
sicca symptoms -- 35.8
prior depression -- 31.5
irritable bowel syndrome -- 29.6
urinary urgency -- 26.3
Raynaud's phenomenon -- 16.7
Other commonly reported associated symptoms include dizziness (often with some swaying on Romberg testing), an eczematous malar rash and chronic itching (my unpublished observations).
Table 2: Location of tender points (Wolfe 1990).
suboccipital muscle insertions at occiput
lower cervical paraspinals
trapezius at midpoint of the upper border
supraspinatus at its origin above medial scapular spine
2nd costochondral junction
2 cm distal to lateral epicondyle in forearm
upper outer quadrant of buttock
knee just proximal to the medial joint line.
To meet ACR 1990 diagnostic criteria for fibromyalgia, digital palpation with an approximate force of 4 kgs. must produce a report of pain in at least 11 of these 18 (bilateral) tender points. Other areas can be tender but the tenderness should be focal rather than diffuse. In addition, tender points must be present on both sides of the body, above and below the waist and in the midline. Widespread pain must have been present for at least 3 months. Some accept a diagnosis of fibromyalgia with fewer than 11 tender points if several associated symptoms from table 2 are also present (Wolfe 1989).
Friday, October 07, 2005
Useful treatments for fibromyalgia syndrome -- 330 (7485): 0 -- BMJUseful treatments for fibromyalgia syndrome -- 330 (7485): 0 -- BMJ: "Useful treatments for fibromyalgia syndrome
A total of 505 articles were reviewed and classified according to their level of evidence...
Strong evidence for efficacy was found for treatment with amitriptyline (Elavil), cyclobenzaprine (Flexeril), exercise,
cognitive behaviour therapy, and patient education.
Modest evidence for efficacy was found for tramadol (Ultram), various selective serotonin reuptake inhibitors, acupuncture,
hypnotherapy, and biofeedback.
Weak evidence for efficacy was found for growth hormone therapy, SAM (S-adenosyl-methionine), chiropractic and massage therapy, electrotherapy, and ultrasound.
No evidence of any evaluation or effectiveness was found for steroids, non-steroidal anti-inflammatory drugs, melatonin,
benzodiazepine hypnotics, or trigger point injections.
Bottom line Treatments for fibromyalgia syndrome with the strongest evidence for efficacy are amitriptyline (Elavil), cyclobenzaprine (Flexeril),
exercise, cognitive behaviour therapy, patient education, and multidisciplinary therapy."
Thursday, October 06, 2005
Action for M.E.Action for M.E.: "Improving the lives of people with M.E.
M.E. is also known as Chronic Fatigue Syndrome (CFS). It is sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS)."
New address for websiteindex: "Online Gambling and Marketing Diaries of a Maven"
Fukuda paper in full - Chronic Fatigue Syndrome: A Comprehensive ApproachThe Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study
Keiji Fukuda, MD, MPH; Stephen E. Straus, MD; Ian Hickie, MD, FRANZCP; Michael C. Sharpe, MRCP, MRC Psych; James G. Dobbins, PhD; Anthony Komaroff, MD; and the International Chronic Fatigue Syndrome Study Group (For a listing of members of the Study group, see Appendix).
The complexities of the chronic fatigue syndrome and the methodologic problems associated with its study indicate the need for a comprehensive, systematic, and integrated approach to the evaluation, classification, and study of persons with this condition and other fatiguing illnesses. We propose a conceptual framework and a set of guidelines that provide such an approach. Our guidelines include recommendations for the clinical evaluation of fatigued persons, a revised case definition of the chronic fatigue syndrome, and a strategy for subgrouping fatigued persons in formal investigations.
Ann Intern Med 1994;121:953-959.
>From the Centers for Disease Control and Prevention, Atlanta, Georgia; the National Institutes of Health, Bethesda, Maryland; Prince Henry Hospital and University of New South Wales, Sydney, Australia; University of Oxford and Warneford Hospital Oxford, United Kingdom; and Brigham and Women's Hospital and Harvard University, Boston, Massachusetts. For current author addresses, see end of text.
We have developed a conceptual framework and a set of research guidelines for use in studies of the chronic fatigue syndrome. The guidelines cover the clinical and laboratory evaluation of persons with unexplained fatigue; the identification of underlying conditions that may explain the presence of chronic fatigue; revised criteria for defining cases of the chronic fatigue syndrome; and a strategy for dividing the chronic fatigue syndrome and other unexplained cases of chronic fatigue into subgroups.
The chronic fatigue syndrome is a clinically defined condition (1-4) characterized by severe disabling fatigue and a combination of symptoms that prominently features self-reported impairments in concentration and short-term memory, sleep disturbances, and musculoskeletal pain. Diagnosis of the chronic fatigue syndrome can be made only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded. No pathognomonic signs or diagnostic tests for this condition have been validated in scientific studies (5-7); moreover, no definitive
treatments for it exist (8). Recent longitudinal studies suggest that some persons affected by the chronic fatigue syndrome improve with time but that most remain functionally impaired for several years (9, 10).
Issues in Chronic Fatigue Syndrome Research
The central issue in chronic fatigue syndrome research is whether the chronic fatigue syndrome or any subset of it is a pathologically discrete entity, as opposed to a debilitating but nonspecific condition shared by many different entities. Resolution of this issue depends on whether clinical, epidemiologic, and pathophysiologic features convincingly distinguish the chronic fatigue syndrome from other illnesses.
Clarification of the relation between the chronic fatigue syndrome and the neuropsychiatric syndromes is particularly important. The latter disorders are potentially the most important source of confounding in studies of chronic fatigue syndrome. Somatoform disorders, anxiety disorders, major depression, and other symptomatically defined syndromes can manifest severe fatigue and several somatic and psychological symptoms and are diagnosed more frequently in populations affected by chronic fatigue (11-13) and the chronic fatigue syndrome (14,15) than in the general population.
The extent to which the features of the chronic fatigue syndrome are generic features of chronic fatigue and deconditioning due to physical inactivity common to a diverse group of illnesses (16, 17) must also be established.
A Conceptual Framework for Studying the Chronic Fatigue Syndrome
In the United States, 24% of the general adult population has had fatigue lasting 2 weeks or longer; 59%to 64% of these persons report that their fatigue has no medical cause (18, 19). In one study, 24% of patients in primary care clinics reported having had prolonged fatigue (21 month) (20). In many persons with prolonged fatigue, fatigue persists beyond 6 months (defined as chronic fatigue) (21, 22).
We propose a conceptual framework (Figure 1) to guide the development of studies relevant to the chronic fatigue syndrome. In this framework, in which the chronic fatigue syndrome is considered a subset of prolonged fatigue (21 month), epidemiologic studies of populations defined by prolonged or chronic fatigue can be used to search for illness patterns consistent with the chronic fatigue syndrome. Such studies, which differ from case control and cohort studies based on predetermined criteria for the chronic fatigue syndrome, will also produce much-needed clinical and laboratory background information.
This framework also clarifies the need to compare populations defined by the chronic fatigue syndrome with several other populations in case-control and cohort studies. The most important comparison populations are those defined by overlapping disorders, by prolonged fatigue, and by forms of chronic fatigue that do not meet criteria for the chronic fatigue syndrome. Controls drawn exclusively from healthy populations are inadequate to confirm the specificity of chronic fatigue syndrome-associated abnormalities.
Figure 1. A conceptual framework of abnormally fatigued populations, including those with the chronic fatigue syndrome (CFS) and overlapping disorders.
This figure consists of a diagram showing the background as the general population, a circlerepresenting the chronicly fatigued subset, a jointsubset of overlapping disorders (depression,fibromyalgia), and then within the fatigued group, andintersecting the "overlapping disorders" is a joint circle representing CFS and Idiopathic chronic fatigue.
Need for Revised Criteria To Define the Chronic Fatigue Syndrome
The possibility that chronic fatigue syndrome study populations have been selected or defined in substantially different ways has made it difficult to interpret conflicting laboratory findings related to the chronic fatigue syndrome (23). For example, the North American chronic fatigue syndrome working case definition (1) has been inconsistently applied by researchers (24). This case definition is frequently modified in practice because some of the criteria are difficult to interpret or to comply with (25) and because opinions differ about the classification of chronic fatigue cases preceded by a history of psychiatric illnesses (26, 27).
Current criteria for the chronic fatigue syndrome also do not appear to define a distinct group of cases (28; Reyes M, et al. Unpublished data). For example, participants in the Centers for Disease Control and Prevention (CDC) chronic fatigue syndrome surveillance system (29) who met the chronic fatigue syndrome case definition did not substantially differ by demographic characteristics, symptoms, and other illness features from those who did not meet the definition (except by criteria used to place patients into one of our predetermined surveillance classification categories [Reyes M, et al. Unpublished data]). These findings indicate that additional subgrouping or stratification of study cases into more homogeneous groups is necessary for comparative studies.
Need for Clinical Evaluation Standards
Our experience suggests that fatigued persons often receive either inadequate or excessive medical evaluations. In the CDC chronic fatigue syndrome surveillance system, all participants were clinically evaluated by a primary physician before enrollment. Subsequently, 18% were found to have a preexisting medical condition that plausibly accounted for their chronic fatiguing illness(Reyes M, et al. Unpublished data). These medical conditions were identified either from a single battery of routine laboratory tests done on blood specimens obtained at enrollment or from review of available medical records.
We believe that inappropriate tests are often used to diagnose the chronic fatigue syndrome in chronically fatigued persons. This practice should be discouraged.
Need for a Comprehensive and Integrated Approach
The complexities of the chronic fatigue syndrome and the existence of several obstacles to our understanding of it make a comprehensive and integrated approach to the study of the chronic fatigue syndrome and similar illnesses desirable. The purpose of the following proposed guidelines (Figure 2) is to facilitate such an approach.
Figure 2. Evaluation and classification of unexplained chronic fatigue. ALT = alanine aminotransferase; BUN =blood urea nitrogen; CBC = complete blood count; ESR =erythrocyte sedimentation rate; PO4 = phosphorus; TSH =thyroid stimulating hormone; UA = urinalysis
This figure is composed of a series of connected text boxes.
A. Clinically evaluate cases of prolonged or chronic fatigue by A. History and physical examination;
B. Mental status examination (abnormalities require appropriate psychiatric, psychologic, or neurologic examination);
C. Tests (abnormal results that strongly suggest an exclusionary condition must be resolved)
1. Screening lab tests CBC, ESR, ALT, total protein, albumin, globulin, alkaline phosphatase, Ca, PO4, glucose, BUN, electrolytes, creatinine, TSH, and UA
2. Additional tests as clinically Indicated to exclude other diagnoses
Exclude case if another cause for chronic fatigue is found.
II. Classify case as either chronic fatigue syndrome or Idiopathic chronic fatigue it fatigue persists or relapses for [at least] 6 months.
A. Classify as chronic fatigue syndrome if:
a. Criteria for severity of fatigue are met, and
b. Four or more of the following symptoms areconcurrently present for [at least] 6 months:
1) impaired memory or concentration, 2) sore throat, 3) tender cervical or axillary lymph nodes, 4) muscle pain, 5) multijoint pain, 6) new headaches, 7) unrefreshing sleep, and 8) post-exertion malaise.
B. Classify as idiopathic chronic fatigue if fatigue severity or symptom criteria for chronic fatiguesyndrome are not met.
III. Subgroup research cases by the presence or absenceof the following essential parameters:
A. Comorbid conditions (psychiatric conditions must be documented by use of an instrument);
B. Current level of fatigue (measured by a scale)
C. Duration of fatigue;
D. Current level of physical function (measured by an instrument)
Subgroup research cases further as needed by optional parameters such as epidemiologic or laboratory features of interest.
Guidelines for the Clinical Evaluation and Study of the Chronic Fatigue Syndrome and Other Illnesses Associated with Unexplained Chronic Fatigue
Definition and Clinical Evaluation of Prolonged Fatigue and Chronic Fatigue
Prolonged fatigue is defined as self-reported, persistent fatigue lasting 1 month or longer. Chronic fatigue is defined as self-reported persistent or relapsing fatigue lasting 6 or more consecutive months.
The presence of prolonged or chronic fatigue requires clinical evaluation to identify underlying or contributing conditions that require treatment. Further diagnosis or classification of chronic fatigue cases cannot be made without such an evaluation. The following items should be included in the clinical evaluation.
1. A thorough history that covers medical and psycho-social circumstances at the onset of fatigue; depression or other psychiatric disorders; episodes of medically unexplained symptoms; alcohol or other substance abuse; and current use of prescription and over-the-counter medications and food supplements.
2. A mental status examination to identify abnormalities in mood, intellectual function, memory, and personality. Particular attention should be directed
toward current symptoms of depression or anxiety, self-destructive thoughts, and observable signs such aspsychomotor retardation. Evidence of a psychiatric or neurologic disorder requires that an appropriate psychiatric, psychological, or neurologic evaluation be done.
3. A thorough physical examination.
4. A minimum battery of laboratory screening tests including complete blood count with leukocyte differential; erythrocyte sedimentation rate; serum levels of alanine aminotransferase, total protein, albumin, globulin, alkaline phosphatase, calcium, phosphorus, glucose, blood urea nitrogen, electrolytes, and creatinine; determination of thyroid-stimulating hormone; and urinalysis.
Routinely doing other screening tests for all patients has no known value (20, 30). However, further tests may be indicated on an individual basis to confirm or exclude another diagnosis, such as multiple sclerosis. In these cases, additional tests or procedures should be done according to accepted clinical standards.
The use of tests to diagnose the chronic fatigue syndrome (rather than to exclude other diagnostic possibilities) should be done only in the setting of protocol-based research. The fact that such tests are investigational and do not aid in diagnosis or management should be explained to the patient.
In clinical practice, no additional tests, including laboratory tests and neuroimaging studies, can be recommended for the specific purpose of diagnosing the chronic fatigue syndrome. Tests should be directed toward confirming or excluding other etiologic possibilities. Examples of specific tests that do not confirm or exclude the diagnosis of the chronic fatigue syndrome include serologic tests for Epstein-Barr virus, retroviruses, human herpesvirus 6, enteroviruses, and Candida albicans; tests of immunologic function, including cell population and function studies; and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single-photon emission computed tomography and positron emission tomography) of the head.
Conditions That Explain Chronic Fatigue
The following conditions exclude a patient from the diagnosis of unexplained chronic fatigue.
1. Any active medical condition that may explain the presence of chronic fatigue (31), such as untreated hypothyroidism, sleep apnea, and narcolepsy, and iatrogenic conditions such as side effects of medication.
2. Any previously diagnosed medical condition whose resolution has not been documented beyond reasonable clinical doubt and whose continued activity may explain the chronic fatiguing illness. Such conditions may include previously treated malignancies and unresolved cases of hepatitis B or C virus infection.
3. Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa; or bulimia nervosa.
4. Alcohol or other substance abuse within 2 years before the onset of the chronic fatigue and at any time afterward.
5. Severe obesity (32, 33) as defined by a body mass index [body mass index= weight in kilograms/(height in meters)2] equal to or greater than 45.
Any unexplained physical examination finding or laboratory or imaging test abnormality that strongly suggests the presence of an exclusionary condition must be resolved before further classification.
Conditions That Do Not Adequately Explain Chronic Fatigue
The following conditions do not exclude a patient from the diagnosis of unexplained chronic fatigue.
1. Any condition defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, including fibromyalgia, anxiety disorders, somatoform
disorders, nonpsychotic or nonmelancholic depression, neurasthenia, and multiple chemical sensitivity disorder.
2. Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented. Such conditions include hypothyroidism for which the adequacy of replacement hormone has been verified by normal thyroid-stimulating hormone levels or asthma in which the adequacy of treatment has been determined by pulmonary function and other testing.
3. Any condition, such as Lyme disease or syphilis, that was treated with definitive therapy before development of chronic symptomatic sequelae.
4. Any isolated and unexplained physical examination finding or laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an
exclusionary condition. Such conditions include an elevated antinuclear antibody titer that is inadequate to strongly support a diagnosis of a discrete connective tissue disorder without other laboratory or clinical evidence.
Major Classification Categories: Chronic Fatigue Syndrome and Idiopathic Chronic Fatigue
Clinically evaluated, unexplained cases of chronic fatigue can be separated into either the chronic fatigue syndrome or idiopathic chronic fatigue on the basis of the following criteria.
A case of the chronic fatigue syndrome is defined by the presence of the following:
1) clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities;
2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue: self-reported impairment in short-term memory
or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain, multijoint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours.
The method used (for example, a predetermined checklist developed by the investigator or spontaneous reporting by the study participant) to establish the presence of these and any other symptoms should be specified.
A case of idiopathic chronic fatigue is defined as clinically evaluated, unexplained chronic fatigue that fails to meet criteria for the chronic fatigue syndrome. The reasons for failing to meet the criteria should be specified.
Subgrouping and Stratification of Major Classification Categories
In formal studies, cases of the chronic fatigue syndrome and idiopathic chronic fatigue should be subgrouped before analysis or stratified during analysis by the presence or absence of essential variables, which should be routinely established in all studies. Further subgrouping by optional variables can be done according to specific research interests.
Essential Subgrouping Variables
1. Any clinically important coexisting medical or neuropsychiatric condition that does not explain thechronic fatigue. The presence or absence, classification, and timing of onset of neuropsychiatric conditions should be established using published or freely available instruments, such as the Composite International Diagnostic Instrument (34), the National Institute of Mental Health Diagnostic Interview Schedule (35), and the Structured Clinical Interview for DSM-III(R) (36).
2. Current level of fatigue, including subjective or performance aspects. These levels should be measured using published or widely available instruments. Examples include instruments by Schwartz and colleagues (37), Piper and colleagues (38), Krupp and colleagues (39), Chalder and colleagues (40), and Vercoulen and
3. Total duration of fatigue.
4. Current level of overall functional performance as measured by published or widely available instruments, such as the Medical Outcomes Study Short Form 36 (42) and the Sickness Impact Profile (43).
Optional Subgrouping Variables
Examples of optional variables include: 1. Epidemiologic or laboratory features of specific interest to researchers. Examples include laboratory documentation or self-reported history of an infectious illness at the onset of fatiguing illness, a history of rapid onset of illness, or the presence or level of a particular immunologic marker.
2. Measurements of physical function quantified by means such as treadmill testing or motion-sensing devices.
Several general points must be appreciated if these guidelines are to be used as intended. First, the overall purpose of the proposed conceptual framework and guidelines is to foster a more systematic and comprehensive approach toward the collection of data about the chronic fatigue syndrome and similar illnesses. As such, these tools are intended for use as standard references. However, none of the components, including the revised case definition of the chronic fatigue syndrome, can be considered definitive. These research tools will evolve as new knowledge is gained.
Second, none of the provisions in these guidelines, especially the definition of idiopathic chronic fatigue and subgroups of the chronic fatigue syndrome, establish new clinical entities. Rather, these defi- nitions were designed to facilitate comparative studies. Finally, general reference to these guidelines should not be substituted for clear and detailed methodologic descriptions when reporting studies. The lack of detailed information about the sources, selection, and evaluation of study participants (including controls), case definitions, and measurement techniques in reports of chronic fatigue syndrome research has contributed substantially to our current difficulties in interpreting research findings.
Several specific points about the clinical evaluation are worth emphasizing. The primary purpose of clinically evaluating a person with unexplained fatigue is to identify and treat any underlying and contributing factors. Such an evaluation should begin, whenever possible, before 6 months have elapsed. Because the particulars of any clinical evaluation will vary from patient to patient, our recommendations have been limited to those aspects of clinical evaluation that can be universally applied to all patients. With regard to the clinical psychiatric evaluation of fatigued persons, we consider a mental status examination to be the minimal acceptable level of assessment. Although a structured psychiatric evaluation of all patients with fatigue is highly desirable, we recognize the practical difficulties of implementing such a recommendation. Diagnosis of the chronic fatigue syndrome should not impede the
treatment of coexisting disorders, notably depression.
Many conditions that are primary causes of chronic fatigue preclude the diagnosis of the chronic fatigue syndrome or idiopathic chronic fatigue. We presented principles for identifying such exclusionary conditions rather than listing them because of the range and complexity of human illnesses. In some instances, however, we identified specific exclusionary conditions. The presence of severe obesity makes the diagnosis of unexplained symptoms, such as fatigue or joint pains, extremely difficult. We distinguished between psychiatric conditions for pragmatic reasons. It is difficult to interpret symptoms typical of the chronic fatigue syndrome in the setting of illnesses such as major psychotic depression or schizophrenia. More importantly, care of these persons should focus on their chronic psychiatric disorder. On the other hand, we did not use other psychiatric disorders, such as anxiety disorders and less severe forms of depression, as a basis for exclusion. Such psychiatric conditions are highly prevalent in persons with chronic fatigue and the chronic fatigue syndrome, and the exclusion of persons with these conditions would substantially hinder efforts to clarify the role that psychiatric disorders have in fatiguing illnesses. This is a particularly important issue to resolve. These parts of the guidelines concur with the recommendation by a 1991 National Institutes of Health workshop (24) that chronic fatigue cases preceded by some, but not all, psychiatric syndromes can be classified as the chronic fatigue syndrome.
The revised case definition for the chronic fatigue syndrome is modeled on the 1988 chronic fatigue syndrome working case definition (1). The purpose of our revisions was to address some of the criticisms (25) of that case definition and to facilitate a more systematic collection of data internationally. We dropped all physical signs from our inclusion criteria because we agreed that their presence had been unreliably documented in past studies. The required number of symptoms was decreased from 8 to 4 and the list of symptoms was decreased from 11 to 8 because we agreed that multiple symptom criteria had increased the restrictiveness of the 1988 chronic fatigue syndrome working case definition without increasing the homogeneity of cases (Reyes M, et al. Unpublished data). Whether to retain any symptom criteria other than chronic fatigue generated the most disagreement among the authors. Disagreement occurred between those who favored a more restrictive approach (using several symptom criteria), as was done in the 1988 chronic fatigue syndrome working case definition, and those who favored a broader definition of chronic fatigue syndrome (using fewer symptom criteria) as was done in the Australian (3) and British (4) chronic fatigue syndrome case definitions. Those favoring multiple
symptoms argued that use of multiple symptoms best reflected the empiric clinical sense of the chronic fatigue syndrome as a distinct entity. Others argued that no symptoms have been shown to be specific for the chronic fatigue syndrome (28) and that some studies suggest that a requirement for multiple symptoms biases the selection of cases toward those with psychiatric disorders (28, 44). Disagreement over this particular issue underscores the need to establish specific features of the chronic fatigue syndrome and the validity of any chronic fatigue syndrome case definition.
Developing an operational definition of fatigue was a problem because the concept of fatigue itself is unclear (45, 46). In our conception of the chronic fatigue syndrome, the symptom of fatigue refers to severe mental and physical exhaustion, which differs from somnolence or lack of motivation and which is not attributable to exertion or diagnosable disease. We retained the requirement of 6 months' duration of
fatigue to facilitate comparison with earlier cases of the chronic fatigue syndrome. The requirement for an "average daily activity below 50%" was eliminated because this level of impairment is difficult to verify.
We defined the condition of "idiopathic chronic fatigue" to focus attention on the need to clarify how other forms of unexplained chronic fatigue are related to the chronic fatigue syndrome.
Our strategy for subgrouping major classification categories depends on the data made available from standardized evaluations of patients with chronic fatigue. Subgrouping by essential variables will encourage the collection of a body of core data. Additional subgrouping by optional variables will allow researchers considerable flexibility in defining specific subgroups to answer specific research questions.
The name "chronic fatigue syndrome" is the final issue that we wish to address. We sympathize with those who are concerned that this name may trivialize this illness. The impairments associated with chronic fatigue syndrome are not trivial. However, we believe that changing the name without adequate scientific justification will lead to confusion and will substantially undermine the progress that has been made in focusing public, clinical, and research attention on this illness. We support changing the name when more is known about the underlying pathophysiologic process or processes associated with the chronic fatigue syndrome and chronic fatigue.
The following are the other members of the International Chronic Fatigue Syndrome Study Group: National Institutes of Health, Bethesda, Maryland: Ann Schluederberg, ScD; University of Colorado, Denver, Colorado: James F. Jones, MD; Prince Henry Hospital and University of New South Wales, Sydney, Australia: Andrew R. Lloyd, MD, FRACP; King's College School of Medicine and Dentistry, London, United Kingdom: Simon Wessely, MRCP, MRC Psych; Polyclinic Medical Center and
Pennsylvania State College of Medicine, Harrisburg, Pennsylvania: Nelson M. Gantz, MD; Texas A & M University Health Science Center and Scott & White
Memorial Hospital, Temple, Texas: Gary P. Holmes, MD; University of Washington Medical Center, Seattle, Washington: Dedra Buchwald, MD; University of Toronto,
Toronto, Canada: Susan Abbey, MD, FRCP(C); University of California, San Francisco, San Francisco, California, and Alta Bates Hospital, Berkeley, California: Jonathan Rest, MD; University of California, San Francisco, San Francisco, California: Jay A. Levy, MD; Food and Drug Administration, Rockville, Maryland: Heidi Jolson, MD, MPH; Lake Tahoe Medical Center, Incline Village, Nevada: Daniel L. Peterson, MD; University Hospital Nijmegen, Nijmegen, the Netherlands: Jan H.M.M. Vercoulen, PhD; Centro Regionale di Riferminento Oncologico, Aviano, Italy: Umberto Tirelli, MD; Karolinska Institute at Huddinge University Hospital, Stockholm, Sweden: Birgitta Even- gard, MD; New Jersey Medical School, Newark, New Jersey: Benjamin H. Natelson, MD; Centers for Disease Control and Prevention, Atlanta, Georgia: Lea Steele, Michele Reyes, and William C. Reeves, MD.
Acknowledgments: The authors thank Carla Arpino, Judy Basso, Lyria Boast, Janet K. Dale, Karen Ezrine, Marya Grambs, K. Kimberly Kenney, Teruo Kitani, David
Klonoff, Dorothy Knight, Gerhard R.F. Krueger, Hirohiko Kuratsune, Gudrun Lindh, Lars Lindquist, Lisa Livens, Alison Mawle, David McCluskey, John O'Connor, Orvalene Prewitt, Bonnie Randall, Karen B. Schmaling, Scott Schmid, John Stewart, Lars Wahlstrom, Denis Wakefield, and Andrew Wilson.
Requests for Reprints: Keiji Fukuda, MD, MPH, Mailstop A15, Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30333.
Current Author Addresses: Drs. Fukuda and Dobbins: Mailstop A15, Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30333.
Dr. Straus: Clinical Center Room 11N228, Laboratory of
Clinical Investigation, National Institutes of Health, 9000 Rockville Pike, Bethesda, MD 20892. Dr. Hickie: School of Psychiatry and Department of Infectious Diseases and Immunology, Prince Henry Hospital, University of New South Wales, Little Bay,
NSW, 2036, Australia. Dr. Sharpe: University of Oxford, Department of Psychiatry, Warneford Hospital, Oxford OX3 7JX, United Kingdom.
Dr. Komaroff: Division of General Medicine, Brigham and Women's Hospital, 75 Francis Street, Boston, MA 02115.
1. Holmes GB, Kaplan JE, Gantz NM, Komarof AL, Schonberger LB, Straus SE, et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med. 1988;108:387-9.
2. Lloyd AR, Wakefield D, Boughton C, Dwyer J. What is myalgic encephalomyelitis? [Letter]. Lancet.1988;1:1286-7.
3. Lloyd AR, Hickie I, Boughton CR, Spencer O, Wakefield D. Prevalence of chronic fatigue syndrome in an Australian population. Med J Aust. 1990;153:522-8.
4. Sharpe MC, Archard LC, Banatvaia JE, Borysiewicz LK, Clare AW, David A, et NL A report-chronic fatigue syndrome: guidelines for research. J R Soc Med.
5. Holmes GP. The chronic fatigue syndrome. In: Schlossberg D, ed. Infectious Mononucleosis. 2nd ed. New York: Springer-Verlag; 1989: 172-93.
6. Klonoff DC. Chronic fatigue syndrome. Clin Infect Dis. 1992,15:812-23.
7. Shafran SD. The chronic fatigue syndrome. Am J Med. 1991;90:730-9.
8. Wilson A, Hickie I, Lloyd A, Wakefield D. The treatment of chronic fatigue syndrome: science and speculation. Am J Med. 1994-96:544-50.
9. Wilson A, Hickie I, Lloyd A, Hadzi-Pavlovic D, Dwyer J, et al. Longitudinal study of outcome of chronic fatigue syndrome. BMJ. 1994 308:756-9.
10. Peterson PK, Schenck CH, Sherman R. Chronic fatigue syndrome in Minnesota. Minn Med. 1991;74:21-6. 11. Manu P, Matthews DA, Lane TJ. The mental health of
patients with a chief complaint of chronic fatigue. A prospective evaluation and follow-up. Arch Intern Med.
12. Manu P, Matthews DA, Lane TJ. Panic disorder among patients with chronic fatigue. South Med J1991;84:451-6.
13. Manu P, Lane TJ, Matthews DA. Somatization disorder m patients with chronic fatigue. Psychosomatics. 1989;30:388-95.
14. Kruesi MJ, Dale J, Straus SE. Psychiatric diagnoses in patients who have chronic fatigue syndrome. J Clin Psychiatry. 1989,50:53-6.
15. Wessely S, Powell R. Fatigue syndromes: a comparison of chronic postviral fatigue with neuromuscular and affective disorders. J Neurol Neurosurg Psychiatry. 1989;52:940-8.
16. Swartz MN. The chronic fatigue syndrome one entity or many? N Engl J Med. 1988;319:1726-8.
17. Pawlikowska T, Chalder T, Hirsch SR Wallace P, Wright DJ, Wessely SC. Population based study of fatigue and psychological distress. BMJ. 1994;308:763-6.
18. Price RK, North CS, Wessely S, Fraser VJ. Estimating the prevalence of chronic fatigue syndrome and associated symptoms in the community. Public Health Rep. 1992;107:514-22.
19. Walker EA, Katon WJ, Jemelka RP. Psychiatric disorders and medical care utilization among people in the general population who report fatigue. J Gen Intern
Med. 1993 8:436-40.
20. Kroenke K, Wood DR, Mangeisdorf AD, Meier NJ, Powell JB. Chronic fatigue in primary care. Prevalence, patient characteristics, and outcome. JAMA. 1988;206:929-34.
21. Sharpe M, Hawton K, Seagroatt V, Pasvol G. Follow up of patients presenting with fatigue to an infectious diseases clinic. BMJ. 1992,305: 147-52.
22. Bates DW, Schmitt W, Buchwald D, Ware NC, Lee J, Thoyer E, et al. Prevalence of fatigue and chronic fatigue syndrome in a primary care practice. Arch Intern Med. 1993;153:2759-65.
23. Mawle AC, Reyes M, Schmid DS. Is chronic fatigue syndrome an infectious disease? Infect Agents Dis. 1994;2:333-41.
24. Schluederberg A, Straus SE, Peterson P, Blumenthal S, Komaroff AL, Spring SB, et al. NIH conference. Chronic fatigue syndrome research. Definition and medical outcome assessment. Ann Intern Med. 1992; 117:325-31.
25. Straus SE. Defining the chronic fatigue syndrome [Editorial]. Arch Intern Med. 1992;152:1569-70.
26. Matthews DA, Lane TJ, Manu P. Definition of the chronic fatigue syndrome [Letter]. Ann Intern Med. 1988;109:511-2.
27. Holmes GP, Kaplan JE, Schonberger LB, Straus SE, Zegans LS, Gantz NM, et al. Definition of the chronic fatigue syndrome [Letter]. Ann Intern Med. 1988;109:512.
28. Hickie I, Lloyd A, Hadzi-Pavlovic D, Parker G, Bird K, Wakefield D. Can the chronic fatigue syndrome be defined by distinct clinical features? Psychol Med. [In
29. Gunn WJ, Connell DB, Randall B. Epidemiology of chronic fatigue syndrome: the Centers for Disease Control study. In: Bock G, Whelan J, eds. Chronic Fatigue Syndrome. New York: Wiley; 1993:83-101. (Ciba Foundation symposium 173).
30. Lane TJ, Matthews DA, Manu P. The low yield of physical examinations and laboratory investigations of patients with chronic fatigue. Am J Med Sci. 1990;299:313-8.
31. Kroenke K. Chronic fatigue: frequency, causes, evaluation, and management. Compr Ther. 1989;15:3-7.
32. Kuczmarski RJ. Prevalence of overweight and weight gain in the United States. Am J Clin Nutr. 1992;55(2 Suppl):495S-502S.
33. Bray GA. Pathophysiology of obesity. Am J ClinNutr. 1992,55(2 Suppl):488S-94S.
34. Robins LN, Wing J, Wittchen HU, Helzer JE, Babor TF, Burke J, et al. The Composite International Diagnostic Interview. An epidemiologic instrument
suitable for use in conjunction with different diagnos- tic systems and m different cultures. Arch Gen Psychiatry. 1988,45: 1069-77.
35. Robins LN, Heizer JE, Croughan J, Ratcliff, KS. National Institute of Mental Health Diagnostic Interview Schedule. Its history, characteristics, and validity. Arch Gen Psychiatry. 1981;38:381-9.
36. Spitzer RL, Williams JB, Gibbon M, First MB. The Structured Clinical Interview for DSM-III-R (SCID). I: History, rationale, and description. Arch Gen Psychiatry. 1992 49:624-9.
37. Schwartz JE, Jandorf L, Krupp LB. The measurement of fatigue: a new instrument. J Psychosom Res. 1993;37:753-62.
38. Piper BF, Lindsey AM, Dodd MJ, Perketich S, Paul SM, Weller S. The development of an instrument to measure the subjective dimension of fatigue. In: Funk
SG, Tournquist PM, Campagne MT, Archer Gopp L, Wiese RA, eds. Key Aspects of Comfort. Management of Pain, Fatigue and Nausea. New York: Springer; 1989:199-208.
39. Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol. 1989;46:1121-3.
40. Chalder T, Berelowitz G, Pawlikowska T, Watts L, Wessely S, Wright D, et al. Development of a fatigue scale. I Psychosom Res. 1993;37: 147-53.
41. Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G. Dimensional assessment of chronic fatigue syndrome. J Psychosom Res. 1994;38:383-92.
42. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). 1. Conceptual framework and item selection. Med Care. 1992;30:473-83.
43. Bergner M, Bobbitt RA, Carter WB, Gilson BS. The Sickness Impact Profile: development and final revision of a health status measure. Med Care. 1981;XIX:787-805.
44. Katon W, Russo J. Chronic fatigue syndrome criteria. A critique of the requirement for multiple physical complaints. Arch Intern Med. 1992;152:1604-9.
45. Lewis G, Wessely S. The epidemiology of fatigue: more questions than answers. J Epidemiol Community Health. 1992;46:92-7.
46. Barofsky I, Legro MW. Definition and measurement of fatigue. Rev Infect Dis. 1991;13(Suppl 1):S94-7.
Chronic Fatigue Syndrome FAQChronic Fatigue Syndrome FAQ: "What is CFS?
Chronic fatigue syndrome (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV).
The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.
The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.
In addition to the official researchers' definition discussed below, patients and experienced clinicians have noticed symptom patterns that seem prominent in CFS. These are described in question 1.01 above, and also include the observations that cognitive dysfunction often increases over time (over several years), and that brain scans often show that blood flow to the brain is decreased.
CFS is defined somewhat differently by various medical groups in different countries. The 1994 research definition published by the U.S. Centers for Disease Control and Prevention recommends a step-wise approach for identifying CFS cases. The first step is to clinically evaluate the presence of chronic fatigue, i.e. "self-reported persistent or relapsing fatigue lasting 6 or more consecutive months".
Conditions that explain chronic fatigue should exclude a diagnosis of CFS. These are:
- "any active medical condition that may explain the presence of chronic fatigue ..." - any previous condition which might explain fatigue and which has not documentably come to an end; - "any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa; or bulimia"; - substance abuse within 2 years prior to onset; - severe obesity.
The following should not exclude a diagnosis of chronic fatigue:
- conditions which cannot be confirmed by lab tests, "including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or nonmelancholic depression, neurasthenia, and multiple chemical sensitivity disorder"; - any condition which might produce chronic fatigue but which is being sufficiently treated; - any condition which might produce chronic fatigue but whose treatment has already been completed; - any finding which on its own is not sufficient to strongly suggest one of the exclusionary conditions.
After the above criteria are met, the following core criteria for CFS are applied: "A case of the chronic fatigue syndrome is defined by the presence of the following:
1) clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social or personal activities; and
2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:
- self-reported impairment in short term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social or personal activities;
- sore throat;
- tender cervical or axillary lymph nodes;
- muscle pain;
- multi-joint pain without joint swelling or redness;
- headaches of a new type, pattern or severity;
- unrefreshing sleep;
- and post exertional malaise lasting more than 24 hours."
The journal citation for the CDC definition article is: Keiji Fukuda, Stephen Straus, Ian Hickie, Michael Sharpe, James Dobbins, Anthony Komaroff, and the International CFS Study Group. "The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study". Ann Intern Med. 1994;121:953-959."
Chronic Fatigue Syndrome and ME House of Commons Hansard Debates 11 May 04House of Commons Hansard Debates for 11 May 2004 (pt 58): "ME continues to be a controversial chronic illness, as I have discovered first-hand in the various correspondence that I have received. It is estimated that 25,000 children and 100,000 to 300,000 adults suffer from ME in Britain. The condition has cost the taxpayer about �4 billion to date, with only small inroads being made into treatment and understanding. The report to the chief medical officer by the working group on chronic fatigue syndrome and ME was a landmark in changing Government perceptions of ME. However, at an operational level, the report's findings must have a greater impact on current practices, as access to benefits continues to present problems for sufferers. Lack of knowledge and understanding of the condition among professionals, widespread disbelief and institutional prejudice, lack of effective evaluation and plain stigmatisation mean that there is little or no consideration of the desperate problems experienced by sufferers. The disability living allowance and the new permitted work rules need to be revisited if we are fundamentally to change institutional prejudice towards this very real illness. I find it appalling that I still have to make this case.
Carli Barry was an ME sufferer who tragically took her own life on 8 February 2001, aged 27. Her mother recently spoke about the system that took away her daughter's independence and dignity:
'Applying for benefits for an invisible illness with no diagnostic test is hell. The result largely depends on the beliefs of the doctor sent to examine youa game of Russian roulette.'
Carli's first application for DLA was turned down. Her second application resulted in payment of mobility allowance at high rate and carer allowance at lower rate. Her third application was completely rejected...."
The Centre for Longitudinal Studies found that people with ME received a significantly smaller proportion of DLA awards for their main disabling condition compared with other groups. By contrast, a significantly higher proportion of ME claimants win their case on appeal. Action for ME conducted a survey entitled "Severely Neglected: ME in the UK", in which 44 per cent. of the respondents who had applied for DLA said they had had to go to appeal. Of those who applied, only 25 per cent. were rejected. That illustrates how DLA is being denied to thousands of ME sufferers.
The first hurdle most apparent to ME sufferers is the fluctuating and difficult initial diagnosis of the illness. Having a good GP who is supportive of a patient's ME experience can make all the difference to a successful DLA claim. There are many such GPs. However, it is far too often the case that a disbelieving or untrained local GP destroys an ME patient's chance of receiving correct treatment and advice on undertaking to receive DLA. To resolve the problem, it is essential that local GPs are equipped to deal with ME.
The chief medical officer's working group report on CFS/ME highlighted the need for more doctors, nurses and health care professionals who know and understand CFS/ME. On 12 May 2003 the Health Minister announced a central revenue budget of £8.5 million to develop services specially designed for people with ME. The investment is intended to pump-prime the development of clinical services where none currently exists, but that should be seen only as a beginning, not as an end.
The second hurdle that exists for ME sufferers claiming DLA is an inflexible, poorly explained and burdensome DLA form. The form consists predominantly of questions requiring a yes or no answer, which do not effectively represent the problems associated with ME as a fluctuating chronic illness. Consequently, ME sufferers often inadvertently misrepresent their condition. Furthermore, the DLA application forms are burdensome and often leave ME sufferers exhausted—owing, ironically, to the very forms that are designed to ensure their future support. That acts as a negative incentive to complete the forms, with the risk that ME sufferers will not claim when they should do so.
The third hurdle is the poor training and education of DLA decision makers, causing bias against ME sufferers. The Association of Young People with ME states:
"If decision makers and DWP assessing doctors were given more balanced training and less biased information about ME, patients would be treated more sympathetically by the benefits system."
However, the Department for Work and Pensions initial training for new entrant decision makers states of ME sufferers that they are able to move
"from bed rest one day to being able to venture far afield the next."
That shows an outrageous misunderstanding of ME that must be addressed
GPs' attitude 'may hinder care'Where do I fit in? Diagnosed with irritable bowel IBS - or spastic colon as it was known back in the 1980s and now plagued by chronic fatigue, possibly fibromyalgia with all it's joint and muscle pains, brain fog, poor sleep etc etc...
BBC NEWS | Health | GPs' attitude 'may hinder care': "A GP's belief about certain medical conditions may block patients from getting best care, say researchers.
46 GPs studied were asked to discuss a series of clinical scenarios involving patients with irritable bowel syndrome (IBS) or chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis or ME... they found some tended to stereotype patients with chronic fatigue syndrome as 'prone to stress'.
In contrast, patients with irritable bowel syndrome were seen to be battling with a debilitating disease.
CFS was officially recognised as a genuine illness in the UK by the Royal Colleges of Physicians and General Practitioners in October 1996.
But some of the GPs tended to view patients with CFS as having certain undesirable traits such as being "introspective" or having a "low symptom threshold".
They saw CFS patients as having "a certain personality trait that is chronic fatigue syndrome waiting to happen".
Rosalind Raine and colleagues suggest the doctors' stereotyping of CFS patients meant they saw the condition less as a discrete disorder, and more as a defining feature of the patient.
Such stereotyping of IBS did not seem to occur.
The study authors suggest one reason why this might be is that it is easier to picture IBS being a physical problem because of it affects a specific part of the body, unlike CFS.
Dr Charles Shepherd, from the ME Association said GPs find CFS a difficult condition to manage.
"Conflicts arise, especially when the GP believes it's psychological rather than physical."
He added that the study authors themselves appeared to advocate psychological interventions for ME, which he said was incorrect.
"The view of the WHO and the department of health is that it's a neurological illness," he said."
Chronic fatigue gene signs found for CFS or MEBBC NEWS | Health | Chronic fatigue gene signs found: "Scientists believe they have pinpointed biological markers of chronic fatigue syndrome which could help develop a test and treatment for the condition.
CFS, or ME, makes people feel extremely tired, and can cause weakness, headaches, and disrupted sleep.
Dr Jonathan Kerr who led the research team, which is currently in the process of moving to St George's, said: "The involvement of such genes does seem to fit with the fact that these patients lack energy and suffer from fatigue."
He added the work could also potentially lead to a treatment for the condition.
"We have shown that a significant part of the pathogenesis resides in the white blood cells and in their activity
"It will open the door to development of pharmacological interventions."
Dr Russell Lane, a neurologist at Charing Cross Hospital, in London, said: "This exciting new work shows that some aspects of this complex illness may be understandable in molecular terms, and that CFS is not a 'made-up' illness."
Monday, October 03, 2005
Lupus blood teststill waiting for the result of this blood test...
I have gone back to putting the pinch of sea salt in filtered water, similar to Alfred Blas recup but much cheaper. Am also considering making an appointment with the dietician and physiotherapist in Derby who specialises in treating fibromyalgia. Things could be back on the up work wise, just a couple of hours weekdays child minding but if I can cope without having a flare up it has to be a good omen. Contacts then may lead to greater things!
I have started a new blog about trying to become a professional online gambler