Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease

Abstract:

In recent years, considerable discussion has occurred about stigma surrounding the name given to an illness currently known as chronic fatigue syndrome (CFS). Although patients and medical personnel have expressed varying opinions on this issue, no studies have evaluated how beliefs about the illness change based upon the type of name used for diagnostic purposes. Proposals have been put forth to rename the illness with an eponym (a famous patient’s or researcher’s name) or with a less trivial sounding, more medically based type of name.

In this study, attributions about CFS were measured in three groups of medical trainees. All groups read the same case study of a person with classic symptoms of chronic fatigue syndrome, with the only difference being in the type of name given. Trainees then were asked to provide attributions about certain aspects of the illness, including its cause, severity, and prognosis.

Results suggested that, across name conditions, most trainees appeared to consider the symptom complex of CFS a serious illness resulting in poor quality of life. In addition, findings indicated that the name, chronic fatigue syndrome, may be regarded less seriously than the Myalgic Encephalopathy name with respect to some important aspects of the illness. In this study, specialty of medical trainee also played a role in how the illness was perceived.

 

Source: Jason LA, Taylor RR, Plioplys S, Stepanek Z, Shlaes J. Evaluating attributions for an illness based upon the name: chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease. Am J Community Psychol. 2002 Feb;30(1):133-48. http://www.ncbi.nlm.nih.gov/pubmed/11928774

 

Attitudes regarding chronic fatigue syndrome: the importance of a name

Abstract:

Undergraduates from diverse academic backgrounds and medical trainees were assessed regarding their attitudes about and familiarity with chronic fatigue syndrome (CFS). We explored whether different names given to chronic fatigue syndrome (CFS, myalgic encephalopathy, or Florence Nightingale disease) were associated with differences in attributions regarding its cause, nature, severity, contagion, prognosis, and treatment. Participants’ attributions toward the illness varied with the names used to characterize it.

Participants prompted with the myalgic encephalopathy name were more likely to attribute a biomedical cause to the illness, and less likely to consider patients as candidates for organ donation than those prompted with the CFS name. Although the medical trainees were less likely to consider the patient as malingering, and more likely to view the illness as leading to poorer quality of life and a poorer prognosis, they were also more likely to consider the illness a form of primary depression, more likely to think the patient would attempt suicide, and less likely to consider associated cognitive symptoms as severe. The implications are discussed.

 

Source: Jason LA, Taylor RR, Stepanek Z, Plioplys S. Attitudes regarding chronic fatigue syndrome: the importance of a name. J Health Psychol. 2001 Jan;6(1):61-71. Doi: 10.1177/135910530100600105. http://www.ncbi.nlm.nih.gov/pubmed/22049238

 

A community-based study of chronic fatigue syndrome

Abstract:

BACKGROUND: Most previous estimates of the prevalence of chronic fatigue syndrome (CFS) have derived largely from treated populations, and have been biased by differential access to health care treatment linked with sex, ethnic identification, and socioeconomic status.

OBJECTIVE: To assess the point prevalence of CFS in an ethnically diverse random community sample.

DESIGN AND PARTICIPANTS: A sample of 28,673 adults in Chicago, Ill, was screened by telephone, and those with CFS-like symptoms were medically evaluated.

MAIN OUTCOME MEASURES AND ANALYSES: Self-report questionnaires, psychiatric evaluations, and complete medical examinations with laboratory testing were used to diagnose patients with CFS. Univariate and multivariate statistical techniques were used to delineate the overall rate of CFS in this population, and its relative prevalence was subcategorized by sex, ethnic identification, age, and socioeconomic status.

RESULTS: There was a 65.1% completion rate for the telephone interviews during the first phase of the study. Findings indicated that CFS occurs in about 0.42% (95% confidence interval, 0.29%-0.56%) of this random community-based sample. The highest levels of CFS were consistently found among women, minority groups, and persons with lower levels of education and occupational status.

CONCLUSIONS: Chronic fatigue syndrome is a common chronic health condition, especially for women, occurring across ethnic groups. Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings.

 

Source: Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37. http://www.ncbi.nlm.nih.gov/pubmed/10527290

 

Estimating the prevalence of chronic fatigue syndrome among nurses

Abstract:

The present study assessed the prevalence of chronic fatigue syndrome (CFS) in a sample of nurses. There is a paucity of studies on the prevalence of CFS in healthcare professionals.

Two samples of nurses were recruited through mailed questionnaires. Data were collected on demographic characteristics and symptoms. In addition from the sample, those nurses with CFS-like symptoms were more comprehensively evaluated using a structured clinical interview and reviewing their medical records. A physician review team estimated the prevalence of CFS to be 1,088 per 100,000.

These findings suggest that nurses might represent a high-risk group for this illness, possibly due to occupational stressors such as exposure to viruses in the work setting, stressful shift work that is disruptive to biologic rhythms, or to other possible stressors in the work settings (e.g., accidents).

 

Source: Jason LA, Wagner L, Rosenthal S, Goodlatte J, Lipkin D, Papernik M, Plioplys S, Plioplys AV. Estimating the prevalence of chronic fatigue syndrome among nurses. Am J Med. 1998 Sep 28;105(3A):91S-93S. http://www.ncbi.nlm.nih.gov/pubmed/9790488

 

Antimuscle and anti-CNS circulating antibodies in chronic fatigue syndrome

Abstract:

 

Chronic fatigue syndrome (CFS) patients suffer from disabling physical and mental fatigue. Circulating autoimmune antibodies may produce symptoms of muscular fatigue by reacting with acetylcholine receptors or calcium binding channels. They can also produce mental status changes by reacting with central nervous system (CNS) antigens. We thoroughly investigated the presence of circulating antimuscle and anti-CNS antibodies in 10 CFS patients and 10 controls. We were unable to detect any pathogenic antibodies.

 

Source: Plioplys AV. Antimuscle and anti-CNS circulating antibodies in chronic fatigue syndrome. Neurology. 1997 Jun;48(6):1717-9. http://www.ncbi.nlm.nih.gov/pubmed/9191795

 

Amantadine and L-carnitine treatment of Chronic Fatigue Syndrome

Abstract:

Carnitine is essential for mitochondrial energy production. Disturbance in mitochondrial function may contribute to or cause the fatigue seen inChronic Fatigue Syndrome (CFS) patients.

Previous investigations have reported decreased carnitine levels in CFS. Orally administered L-carnitine is an effective medicine in treating the fatigue seen in a number of chronic neurologic diseases. Amantadine is one of the most effective medicines for treating the fatigue seen in multiple sclerosis patients. Isolated reports suggest that it may also be effective in treating CFS patients. Formal investigations of the use of L-carnitine and amantadine for treating CFS have not been previously reported.

We treated 30 CFS patients in a crossover design comparing L-carnitine and amantadine. Each medicine was given for 2 months, with a 2-week washout period between medicines. L-Carnitine or amantadine was alternately assigned as first medicine.

Amantadine was poorly tolerated by the CFS patients. Only 15 were able to complete 8 weeks of treatment, the others had to stop taking the medicine due to side effects. In those individuals who completed 8 weeks of treatment, there was no statistically significant difference in any of the clinical parameters that were followed.

However, with L-carnitine we found statistically significant clinical improvement in 12 of the 18 studied parameters after 8 weeks of treatment. None of the clinical parameters showed any deterioration. The greatest improvement took place between 4 and 8 weeks of L-carnitine treatment. Only 1 patient was unable to complete 8 weeks of treatment due to diarrhea.

L-Carnitine is a safe and very well tolerated medicine which improves the clinical status of CFS patients. In this study we also analyzed clinical and laboratory correlates of CFS symptomatology and improvement parameters.

 

Source: Plioplys AV, Plioplys S. Amantadine and L-carnitine treatment of Chronic Fatigue Syndrome. Neuropsychobiology. 1997;35(1):16-23. http://www.ncbi.nlm.nih.gov/pubmed/9018019

 

Chronic fatigue syndrome (myalgic encephalopathy)

Abstract:

Chronic fatigue syndrome is associated with many misconceptions. In this review, we attempt to summarize various pathogenic hypotheses for this disease and discuss new lines of insight into causes and treatments of this baffling and most frustrating condition.

 

Source: Plioplys S, Plioplys AV. Chronic fatigue syndrome (myalgic encephalopathy). South Med J. 1995 Oct;88(10):993-1000. http://www.ncbi.nlm.nih.gov/pubmed/7481975

Estimating rates of chronic fatigue syndrome from a community-based sample: a pilot study

Abstract:

Most of the Chronic Fatigue Syndrome (CFS) epidemiological studies have relied on physicians who refer patients having at least six months of chronic fatigue and other symptoms. However, there are a number of potential problems when using this method to derive prevalence statistics.

For example, some individuals with CFS might not have the economic resources to access medical care. Other individuals with CFS might be reluctant to use medical personnel, particularly if they have encountered physicians skeptical of the authenticity of their illness. In addition, physicians that are skeptical of the existence of CFS might not identify cases.

In the present pilot study, a random community sample (N = 1,031) was interviewed by telephone in order to identify and comprehensively evaluate individuals with symptoms of CFS and those who self-report having CFS. Different definitions of CFS were employed, and higher rates (0.2%) of CFS were found than in previous studies. Methodological benefits in using more rigorous epidemiological methods when estimating CFS prevalence rates are discussed.

 

Source: Jason LA, Taylor R, Wagner L, Holden J, Ferrari JR, Plioplys AV, Plioplys S, Lipkin D, Papernik M. Estimating rates of chronic fatigue syndrome from a community-based sample: a pilot study. Am J Community Psychol. 1995 Aug;23(4):557-68. http://www.ncbi.nlm.nih.gov/pubmed/8546110

 

Chronic fatigue syndrome

Comment on: Chronic fatigue syndrome: a follow up study. [J Neurol Neurosurg Psychiatry. 1994]

 

Chronic fatigue syndrome: a follow up study by Bonner et al’ reported that 47 patients initially diagnosed with “chronic fatigue” were contacted for follow up four years later. The authors indicated that “These patients were initially assessed before the current criteria for chronic fatigue syndrome became available, but most would have satisfied the criteria retrospectively” (p 617). At the outset, all patients were offered cognitive behavioural treatment and some were offered antidepressant medications. Each patient then made a decision to either undergo or decline cognitive behavioural treatment. Four years later, those patients who reported functional improvement were more likely to have elected to receive the cognitive behavioural treatment. Additionally, patients in the group that did not report any functional improvement were more likely to score higher on measures of depression.

The US Centers for Disease Control and Prevention (CDC) case definition,2 the proposed revisions to the CDC case definition,3 and the guidelines for research set forth by Sharpe et al4 were cited, but the researchers did not make it clear as to which criteria were used to diagnose which patients. Thus it is unknown whether uniform criteria were applied to diagnose all patients at the outset. Moreover, the authors did not specify just how many of the initial 47 patients met any of the cited criteria for chronic fatigue syndrome, as opposed to chronic fatigue. In short, they did not differentiate the exact number of chronic fatigue syndrome v chronic fatigue cases.

Only 29 of the original 47 patients (62%) agreed to be interviewed for the follow up. Thus 18 (38%) of the original patients were not included in the outcome data, where 10 subjects reported little or no improvement and 19 subjects reported improvement or recovery. The authors acknowledged that the small patient sample size constituted a methodological shortcoming, but nevertheless concluded “that there is a strong association between successful completion of [cognitive] treatment and the absence of functional disability at the four year follow up” (p 620). They further suggest that costs associated with long term disability could be reduced by the utilisation of cognitive therapy in the treatment of chronic fatigue syndrome. We would like to emphasise that the small patient sample size, together with the lack of availability of almost 40% of the initial patients for interview at follow up, make such conclusions highly inappropriate.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1073573/pdf/jnnpsyc00030-0116.pdf

 

Source: Lipkin DM, Robin R, Vasquez L, Plioplys AV, Plioplys S. Chronic fatigue syndrome. J Neurol Neurosurg Psychiatry. 1995 Jun;58(6):764-5. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1073573/

 

Electron-microscopic investigation of muscle mitochondria in chronic fatigue syndrome

Abstract:

Patients with chronic fatigue syndrome (CFS) suffer from disabling physical and mental fatigue. Abnormalities in mitochondrial function can lead to fatigue and weakness. Ultrastructural mitochondrial abnormalities have been reported to be present in CFS patients.

We obtained percutaneous needle muscle biopsies from 15 CFS patients and 15 age- and sex-matched controls. We investigated previously reported ultrastructural abnormalites in CFS: subsarcolemmal mitochondrial aggregates, intermyofibrillar mitochondrial aggregates, mitochondrial circumference, area, pleomorphism and the presence of compartmentalization of the inner mitochondrial membrane. All of the steps of tissue processing, electron microscopy and data abstracting and analysis were performed in a totally blinded fashion. All of our data were rigorously quantified.

We found no difference in any of these studied parameters between CFS patients and controls. Although there is no ultrastructural mitochondrial abnormality in CFS patients, other lines of evidence suggest the presence of a possible functional mitochondrial abnormality.

 

Source: Plioplys AV, Plioplys S. Electron-microscopic investigation of muscle mitochondria in chronic fatigue syndrome. Neuropsychobiology. 1995;32(4):175-81. http://www.ncbi.nlm.nih.gov/pubmed/8587699