The prognosis of different fatigue diagnostic labels: a longitudinal survey

BACKGROUND: Several different diagnostic labels exist for the fatigue syndromes, including chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and postviral fatigue syndrome (PVFS). An allied condition is fibromyalgia. No study has examined prognostic differences across these different labels. OBJECTIVE: To compare the prognoses of patients labelled with different fatigue syndromes in primary care. METHODS: We performed a longitudinal survey, using electronic records from the General Practice Research Database. All 18,122 patients diagnosed by their GP with a fatigue syndrome from 1988-2001 with a minimum of one year of records after diagnosis were collated into four groups: CFS, ME, PVFS and fibromyalgia. CFS and ME were combined for the main analysis as no code for CFS was available until 1995. The length of illness was calculated as the interval between the diagnosis and the last recorded fatigue symptom, expressed as days per year, to account for differing lengths of record after diagnosis. RESULTS: Patients with CFS/ME combined had a worse prognosis (median length of illness 80 days per year; interquartile range 0-242) than fibromyalgia (51; 0-244) or PVFS 0 (0-108), a significant difference, P < 0.001. In a subgroup analysis, ME had a worse prognosis (median length of illness in days per year 106; interquartile range 0-259) than CFS (33; 0-170), P < 0.001, in spite of a better course before diagnosis. Secondary outcome measures were consistent with these results. CONCLUSION: There were important differences in outcome between the various fatigue labels, with ME having the worst prognosis and PVFS the best. This could be an adverse effect of the label ME itself. Alternatively, patients who are destined to have a worse prognosis may preferentially attract the ME label. Our data support the first interpretation.     

Negotiating the diagnostic uncertainty of contested illnesses: physician practices and paradigms

In the absence of scientific consensus about contested illnesses such as Chronic Fatigue Syndrome (CFS), Multiple Chemical Sensitivities (MCS), and Gulf War Syndrome (GWS), physicians must make sense of competing accounts and develop practices for patient evaluation. A survey of 800 United States physicians examined physician propensity to diagnose CFS, MCS, and GWS, and the factors shaping clinical decision making. Results indicate that a substantial portion of physicians, including nonexperts, are diagnosing CFS, MCS, and GWS. Diagnosing physicians manage the uncertainty associated with these illnesses by using strategies that enhance bounded rationality and aid in thinking beyond current disease models. Strategies include consulting ancillary information sources, conducting analytically informed testing, and considering physiological explanations of causation. By relying on these practices and paradigms, physicians fit CFS, MCS, and GWS into an explanatory system that makes them credible and understandable to them, their patients, and the medical community. Findings suggest that physicians employ rational decision making for diagnosing contested illnesses, creating a blueprint of how illnesses lacking conclusive pathogenic and etiological explanations can be diagnosed. Findings also suggest that patients with contested illnesses might benefit from working with physicians who use these diagnostic strategies, since they help manage the complexity and ambiguity of the contested illness diagnostic process and aid in diagnosis. In addition, findings provide a window into how emerging illnesses get diagnosed in the absence of medical and scientific consensus, and suggest that diagnosing physicians advance the legitimacy of controversial illnesses by constructing the means for their diagnosis.     

Menopausal Transition Symptoms in Midlife Women Living With Fibromyalgia and Chronic Fatigue

We aimed to determine how menopausal transition symptoms cluster across 216 midlife women with fibromyalgia, chronic fatigue syndromes (FMS/CFS), or both and subsequently to compare symptom factor severity scores by menopausal status among these women and compare symptom reporting with prior community-based samples of women without obvious illness. We designed a cross-sectional telephone survey of 216 women aged 35 to 55, diagnosed with FMS/CFS, symptomatic in the prior 6 months, and without hysterectomy. Thirty-six of 61 symptoms loaded on five factors: aroused/anxious mood, depressed mood/withdrawal, musculoskeletal, gastrointestinal (GI), and vasomotor. Peri- and postmenopausal women had higher symptom severity scores for musculoskeletal, GI, and vasomotor factors but not mood factors. Symptoms for the women we studied who had FMS/CFS clustered similar to those in previous community-based samples of midlife women without major illness; however, the number of women experiencing symptoms was much higher among our sample.     

Menopausal transition symptoms in midlife women living with fibromyalgia and chronic fatigue

We aimed to determine how menopausal transition symptoms cluster across 216 midlife women with fibromyalgia, chronic fatigue syndromes (FMS/CFS), or both and subsequently to compare symptom factor severity scores by menopausal status among these women and compare symptom reporting with prior community-based samples of women without obvious illness. We designed a cross-sectional telephone survey of 216 women aged 35 to 55, diagnosed with FMS/CFS, symptomatic in the prior 6 months, and without hysterectomy. Thirty-six of 61 symptoms loaded on five factors: aroused/anxious mood, depressed mood/withdrawal, musculoskeletal, gastrointestinal (GI), and vasomotor. Peri- and postmenopausal women had higher symptom severity scores for musculoskeletal, GI, and vasomotor factors but not mood factors. Symptoms for the women we studied who had FMS/CFS clustered similar to those in previous community-based samples of midlife women without major illness; however, the number of women experiencing symptoms was much higher among our sample.     

Assessing clinical judgment with standardized patients

Family physicians and general practitioners see the majority of patients with uncomplicated rheumatic disease, yet information on database collection and clinical judgment in such practices is limited. Trained patients with uncomplicated rheumatic disease (standardized patients) were used to evaluate these abilities in 26 family physicians at the University of Arizona College of Medicine in blinded, but previously consented to, brief new encounters. Ability to formulate an assessment and to plan was evaluated as well as ability to collect diagnostic information. Few physicians explored the psychosocial impact of the illness (4 percent) or the role of depression (0 percent). In the brief encounter with a localized complaint, little inquiry was directed to systemic disease (46 percent). Physicians more uniformly asked about the chief complaint (96 percent) and time of onset (88 percent). Physical examination items most commonly omitted were evaluation of systemic joint involvement (69 percent) and muscle wasting in the involved area (59 percent). Referral occurred on 15 percent of encounters and patient education occurred in 62 percent. Three quarters of physicians developed an adequate assessment and virtually all developed an adequate patient care plan.     

Neurocognitive complaints and functional status among patients with chronic fatigue syndrome and fibromyalgia

Purpose

The purpose of this study was to conduct a longitudinal examination of cognitive complaints and functional status in patients with chronic fatigue syndrome (CFS) alone and those who also had fibromyalgia (CFS/FM).

Methods

A total of 93 patients from a tertiary care fatigue clinic were evaluated on four occasions, each 6 months apart. Each evaluation included a tender point assessment, and self-reported functional status and cognitive complaints.

Results

Patients with CFS/FM reported significantly worse physical functioning, more bodily pain, and more cognitive difficulties (visuo-perceptual ability and verbal memory) than patients with CFS alone. Over time, bodily pain decreased only for participants with CFS alone. Verbal memory problems were associated with more bodily pain for both patient groups, whereas visuo-perceptual problems were associated with worse functional status for patients with CFS alone.

Conclusions

This study adds to the literature on functional status, longitudinal course, and cognitive difficulties among patients with CFS and those with CFS and FM. The results suggest that patients with CFS/FM are more disabled, have more cognitive complaints, and improve more slowly over time than patients with CFS alone. Specific cognitive difficulties are related to worse functional status, which supports the addition of cognitive difficulties to the FM case criteria.

     

Patient power and control: a study of women with uncertain illness trajectories

The authors interviewed 12 women diagnosed with chronic fatigue syndrome and 13 with fibromyalgia with the aim of determining the strategies they perceive themselves as using to gain control over their situation during the health care process. The results highlight various strategies that the women report applying to find a way of managing the illness and to influence caregivers. They describe, for example, how they try to gain control over their situation by acquiring knowledge about the illness. The women also describe various power strategies they use in their interaction with the caregivers to take command of their situation, namely exiting, noncompliance, confrontation, persuasion/insistence, making demands, and demonstrative distancing.     

Patients' perceptions of medical care in chronic fatigue syndrome

This study investigated perceptions of medical care among patients with chronic fatigue syndrome (CFS) referred to a specialist clinic. Sixty-eight patients completed a questionnaire survey on their overall satisfaction with medical care received since the onset of their illness, and their views on specific aspects of care. Two-thirds of patients were dissatisfied with the quality of medical care received. Dissatisfied patients were significantly more likely to describe delay, dispute or confusion over diagnosis; to have received and rejected a psychiatric diagnosis; to perceive doctors as dismissive, skeptical or not knowledgeable about CFS and to feel that the advice given was inadequate or conflicting. Satisfied patients were significantly more likely to perceive doctors as caring, supportive and interested in their illness; to state that they did not expect their doctors to cure CFS and to perceive their GP or hospital doctor as the source of greatest help during their illness. Many patients were critical of the paucity of treatment, but this was not associated with overall satisfaction. The findings suggest that medical care was evaluated less on the ability of doctors to treat CFS, and more on their interpersonal and informational skills. Dissatisfaction with these factors is likely to impede the development of a therapeutic doctor-patient alliance, which is central to the effective management of CFS. The findings suggest a need for better communication and better education of doctors in the diagnosis and management of CFS.     

Chronic fatigue syndrome and occupational health

Chronic fatigue syndrome (CFS) is a controversial conditionthat many occupational physicians find difficult to advise on.In this article we review the nature and definition of CFS,the principal aetiologic hypotheses and the evidence concerningprognosis. We also outline a practical approach to patient assessment,diagnosis and management. The conclusions of this review arethen applied to the disability discrimination field. The implicationsof the new UK occupational health legislation are also examined.Despite continuing controversy about the status, aetiology andoptimum management of CFS, we argue that much can be done toimprove the outcome for patients with this condition. The mosturgent needs are for improved education and rehabilitation,especially in regard to employment. Occupational physiciansare well placed to play an important and unique role in meetingthese needs.     

‘Betwixt and between’; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)

This paper explores experiences of 16 people claiming to have recovered from Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) using the concept of liminality. Liminality describes the status of those falling between socially recognised and medically sanctioned categories, and illuminates both the experience of illness and the process of recovery from ME/CFS. The liminality experienced during illness was akin to that described by Turner with a degree of communitas among sufferers. As recovery progressed, participants stressed the percentage to which they had improved, and compared themselves with peers and themselves prior to the illness. Recovery did not mean transition into a post‐liminal phase, but involved a new liminality, characterised by straddling boundaries between illness and wellness. Participants continued strategies such as rest, pacing and meditation. This second liminal state included difficulty in communicating the experience convincingly, and estrangement from the ME/CFS community. Thus, recoverees moved from the liminality of illness to a second, and less legible state of sustained liminality in recovery, described as having one foot in the ill world, one foot in the well world. This suggests that more needs to be understood about the recovery experience to assist those making the transition toward wellness.     

Illness management strategies among Chinese immigrants living with arthritis

The purpose of this qualitative study was to explore arthritis management strategies among Chinese immigrants in Calgary, Canada, and to assess factors, that impact on these strategies. Purposive sampling was used to select 19 Chinese immigrants living with arthritis. Data were collected by means of in-depth interviews. The interview data were analyzed according to the following steps: (1). transcribing interview materials, (2). developing codes, categories and themes, (3). theoretical coding, and (4). laying out the theoretical framework. The results of this study describe factors, that impacted on illness management strategies. These include arthritic symptoms, beliefs about arthritis, beliefs about Western medicine based on treatment experience, beliefs about Chinese medicine, perceived barriers to using Chinese or Western medicine and social support. The emerging process of illness management shows that immigrants usually started using self-care remedies, followed by consulting Western physicians, consulting Chinese healers, and then returning to Western medicine. The results illustrate that disease management strategies among Chinese immigrants are impacted by disease, personal and cultural factors. These factors suggest helpful directions to providing culturally sensitive care, which can lead to greater satisfaction and well being for Chinese immigrants with arthritis.     

Direct observation of smoking cessation activities in primary care practice

OBJECTIVE: Our goals were to determine how often family physicians incorporate smoking cessation efforts into routine office visits and to examine the effect of patient, physician, and office characteristics on the frequency of these efforts. STUDY DESIGN: Data was gathered using direct observation of physician-patient encounters, a survey of physicians, and an on-site examination of office systems for supporting smoking cessation. POPULATION: We included patients seen for routine office visits in 38 primary care physician practices. OUTCOMES MEASURED: The frequency of tobacco discussions among all patients, the extent of these discussions among smokers, and the presence of tobacco-related systems and policies in physicians' offices were measured. RESULTS: Tobacco was discussed during 633 of 2963 encounters (21%; range among practices = 0%-90%). Discussion of tobacco was more common in the 58% of practices that had standard forms for recording smoking status (26% vs 16%; P=.01). Tobacco discussions were more common during new patient visits but occurred less often with older patients and among physicians in practice more than 10 years. Of 244 smokers identified, physicians provided assistance with smoking cessation for 38% (range among practices = 0%-100%). Bupropion and nicotine-replacement therapy were discussed with smokers in 31% and 17% of encounters, respectively. Although 68% of offices had smoking cessation materials for patients, few recorded tobacco use in the "vital signs" section of the patient history or assigned smoking-related tasks to nonphysician personnel. CONCLUSIONS: Smoking cessation practices vary widely in primary care offices. Strategies are needed to assist physicians with incorporating systematic approaches to maximize smoking cessation rates.     

Longitudinal analysis of symptoms reported by patients with chronic fatigue syndrome

PURPOSE: To determine the effect of chronic fatigue syndrome (CFS) illness duration and onset type on the likelihood of reporting a symptom during successive follow-up periods.METHODS: In 1997, a two-phase RDD survey in Wichita, Kansas, was conducted to estimate the prevalence of CFS. Phase I identified 56,154 respondents 18-69 years of age and screened for severe fatigue, extreme tiredness or exhaustion lasting for 1 month or longer. In phase II an equal number of fatigued (n = 7,176) and randomly selected non-fatigued subjects were asked about 8 CFS and 13 non-CFS symptoms, as well as the presence of specific medical and psychiatric conditions. Eligible respondents were clinically evaluated to establish CFS diagnosis. Phase II respondents were re-contacted at 12- (n = 4,331) and 24-months (n = 4,266) for additional follow-up and diagnosis. In this study we considered symptoms reported as being present most of the time during each successive observation period. Generalized estimating equations were used to model symptoms over time and to address study questions. Such a model accounts for correlations among repeated symptoms for each subject. We used an auto-regressive structure for the correlation matrix, assuming the correlations between each pair of repeated symptoms should decrease as the time between symptoms increased.RESULTS: There were 74 CFS patients who had been ill for 1 to 20 years (median = 6.3 years). Among these, 46 reported gradual and 28 reported sudden onset. Symptoms fluctuated over the course of illness. However, only stomach pain (non-CFS symptom) was more likely to be reported as duration of illness increased (p < 0.05). There was no association between onset type and the likelihood of reporting a symptom during an interview, except that chills and severe headaches were more likely to be reported by sudden cases.CONCLUSIONS: The likelihood of expressing CFS and non-CFS symptom "most of the time" is the same across years of illness. More analyses are warranted to consider expression of symptoms for >/=6 months and severe symptoms.     

Chronic Fatigue in a Population-Based Study of Gulf War Veterans

Fatigue has been associated with illness in veterans of the Gulf War; however, few studies have confirmed self-reported fatigue by using clinical evaluation, and symptomatic veterans have not been evaluated with established criteria for Chronic Fatigue Syndrome (CFS). The authors describe the frequency and clinical characteristics of CFS in a sample of veterans residing in the northwestern United States. The sample was selected randomly from U.S. Department of Defense databases of troops deployed to southwest Asia during the Gulf War. The selected individuals were invited to participate in a clinical case-control study of unexplained illness. Of 799 survey respondents eligible for clinical evaluation, 178 had fatigue symptoms. Of the 130 veterans who were evaluated clinically, 103 had unexplained fatigue, and 44 veterans met the 1994 U.S. Centers for Disease Control criteria for CFS. In this population, the authors estimated a minimum prevalence of any unexplained fatigue to be 5.1%, and of CFS to be 2.2%. The estimated prevalence was greater among females than among males. Cases were similar to healthy controls, as determined by laboratory tests and physical findings. In comparison to several clinical studies of CFS patients, the authors of this study found a lower proportion of veterans who reported a sudden onset of symptoms (19%) vs. a gradual onset (50%). Although it has previously been suggested that veterans of the Gulf War suffer from higher rates of chronic fatigue than the general population, the study results described herein–on the basis of clinical examination of a population-based sample of veterans–actually indicate that an increased rate may indeed exist. Gulf War veterans with unexplained fatigue should be encouraged to seek treatment so that the impact of these symptoms on overall quality of life can be reduced.     

Chronic fatigue in a population-based study of Gulf War veterans

Fatigue has been associated with illness in veterans of the Gulf War; however, few studies have confirmed self-reported fatigue by using clinical evaluation, and symptomatic veterans have not been evaluated with established criteria for Chronic Fatigue Syndrome (CFS). The authors describe the frequency and clinical characteristics of CFS in a sample of veterans residing in the northwestern United States. The sample was selected randomly from U.S. Department of Defense databases of troops deployed to southwest Asia during the Gulf War. The selected individuals were invited to participate in a clinical case-control study of unexplained illness. Of 799 survey respondents eligible for clinical evaluation, 178 had fatigue symptoms. Of the 130 veterans who were evaluated clinically, 103 had unexplained fatigue, and 44 veterans met the 1994 U.S. Centers for Disease Control criteria for CFS. In this population, the authors estimated a minimum prevalence of any unexplained fatigue to be 5.1%, and of CFS to be 2.2%. The estimated prevalence was greater among females than among males. Cases were similar to healthy controls, as determined by laboratory tests and physical findings. In comparison to several clinical studies of CFS patients, the authors of this study found a lower proportion of veterans who reported a sudden onset of symptoms (19%) vs. a gradual onset (50%). Although it has previously been suggested that veterans of the Gulf War suffer from higher rates of chronic fatigue than the general population, the study results described herein--on the basis of clinical examination of a population-based sample of veterans-actually indicate that an increased rate may indeed exist. Gulf War veterans with unexplained fatigue should be encouraged to seek treatment so that the impact of these symptoms on overall quality of life can be reduced.