Illness experience, depression, and anxiety in chronic fatigue syndrome

Abstract:

OBJECTIVE: Given the high rate of psychiatric comorbidity with chronic fatigue syndrome (CFS), we considered two possible correlates of anxiety and depression: lack of illness legitimization and beliefs about limiting physical activity.

METHOD: A total of 105 people diagnosed with CFS reported on their experiences with medical professionals and their beliefs about recovery and completed the depression and anxiety subscales of the Brief Symptom Inventory.

RESULTS: Those who said that their physician did not legitimize their illness (36%) had higher depression and anxiety scores (P’s<.05) than their counterparts. Those who believed that limiting their physical exertion was the path to recovery (55%) had lower depression and anxiety scores (P’s<.01) than their counterparts.

CONCLUSION: Lack of illness legitimization ranked high as a source of dissatisfaction for CFS patients, and it may aggravate psychiatric morbidity. Many CFS patients believed that staying within what they felt to be their physical limits would improve their condition. This belief, and possibly an accompanying sense of control over their symptoms, may alleviate psychiatric morbidity.

 

Source: Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. Illness experience, depression, and anxiety in chronic fatigue syndrome. J Psychosom Res. 2002 Jun;52(6):461-5. http://www.ncbi.nlm.nih.gov/pubmed/12069870

 

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

 

On the epidemiology of ‘mysterious’ phenomena

Abstract:

In the field of epidemiology, research topics are favored or dismissed depending on whether respective variables under investigation are believed to exist according to current scientific theories. Unconventional independent variables or exposures, such as religiousness and spirituality, and controversial dependent variables or outcomes, such as chronic fatigue syndrome, may be considered unacceptable topics for researchers because they do not fit comfortably into the consensus clinical perspectives of mainstream medical scientists or physicians.

Disapproval of research in these and other taboo areas is generally masked by claims that such studies are “pseudoscientific,” despite hundreds or thousands of peer-reviewed publications on these topics. In reality, seemingly “mysterious” variables are equally as amenable to epidemiologic research as any other exposure or disease. Similarly, alternative therapies are able to be investigated using existing methods, despite claims to the contrary. Such research is vital for scientific understanding to be expanded into new areas of inquiry.

 

Source: Levin J, Steele L. On the epidemiology of ‘mysterious’ phenomena. Altern Ther Health Med. 2001 Jan;7(1):64-6. http://www.ncbi.nlm.nih.gov/pubmed/11191044

 

Diagnose and be damned. Corroboration is important when children’s illnesses are diagnosed

EDITOR—Marcovitch’s arguments about treatment of the chronic fatigue syndrome (myalgic encephalomyelitis) in children are illogical.1 He writes of the “hatchet job” performed by Panorama in the programme of 8 November and refers to the Washington Post’s policy that news requires corroboration.

One of the responses to his article, by Wessely [published here, p 1005], states, “contrary to the message of the programme, the management of chronic fatigue syndrome in children is not contentious.”2 In referring to a case reported by Panorama Marcovitch states that “parents’ views and those of the local medical team were in conflict.” Yet the programme made clear that the dispute was between the parents supported by their own medical advisers and the local medical team, so perhaps there is greater disagreement than has been asserted.

Marcovitch discussed at length Munchausen’s syndrome by proxy; Panorama labelled one of the cases of myalgic encephalitis as being a case of this syndrome. No one likes receiving emotional, intemperate outbursts, even from people who think they have been wrongly accused. But what is sauce for the goose is surely sauce for the gander. Even doctors sometimes make mistakes, yet Marcovitch disregards the possibility that parents, knowing themselves innocent, may feel themselves to have been receiving exactly the same type of vituperative attack that he objects to when doctors are on the receiving end. Such allegations turn on fact rather than clinical opinion so should be subject to Marcovitch’s own test of corroboration.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1117876/

 

Source: Pheby D. Diagnose and be damned. Corroboration is important when children’s illnesses are diagnosed. BMJ. 2000 Apr 8;320(7240):1004. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1117876/ (Full article)

 

Doing things with illness. The micro politics of the CFS clinic

Abstract:

This paper focuses on lay and professional ideas about the nature of chronic fatigue syndrome (CFS), and in particular, the ways in which understandings of the disorder are developed in a clinical setting. Our data are drawn from observations of consultations between sufferers and physicians in a UK medical out-patients clinic.

We treat the clinic as a political field. That is to say, as an arena in which ‘problems’ (about the management of illness) are constituted, and alternative approaches and solutions to such problems are pressed. We note that in the realms of symptoms, aetiology and treatment evaluation, lay people in the CFS clinic have quite distinct ideas about what their problems are and how they might be analysed and managed–ideas that are often in conflict with those of medical professionals.

Thus, lay sufferers, for example, operate within a different conceptual terrain from that of many professional experts. They are more likely to refer to a disease (myalgic encephalomyelitis or ME), rather than a syndrome. They call upon different kinds of hypotheses to explain their symptoms. They hold to conflicting ideas about the order of causal sequences, and they give emphasis to different kinds of phenomena in their accounts of illness.

As a consequence, clinical consultations can often take on the form of a political contest between physician and patient to define the true and real nature of the patient’s disorder–a micro political struggle in which neurological symptoms can be re-framed as psychiatric symptoms, and psychiatric symptoms as neurological. In short, a contest in which the demarcation lines between mind and body are continually assessed and re-defined, and the tenets of ‘biomedicine’ are constantly challenged.

 

Source: Banks J, Prior L. Doing things with illness. The micro politics of the CFS clinic. Soc Sci Med. 2001 Jan;52(1):11-23. http://www.ncbi.nlm.nih.gov/pubmed/11144910

 

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

 

Feminist perspectives on the social construction of chronic fatigue syndrome

Abstract:

We contrast Western medical views of chronic fatigue syndrome (CFS) etiology, diagnosis, and treatment with views maintained by a predominantly female CFS population. We argue that the failure of Western medicine to demonstrate a viral etiology for CFS led to a paradigmatic shift in research perspectives, which then embraced psychiatric and sociocultural explanations for CFS. As a result, CFS was delegitimized as a biomedical phenomenon within medical, academic, governmental, and public arenas.

We compare alternative social constructions of CFS with issues pertaining to multiple sclerosis (MS), an illness that similarly predominates among women. Patient perspectives suggest that the history of medical attitudes toward CFS may eventually parallel the transformations that occurred in relation to MS. In particular, the discovery of biological markers for CFS may lay to rest the categorization of CFS as largely within the psychiatric realm.

 

Source: Richman JA, Jason LA, Taylor RR, Jahn SC. Feminist perspectives on the social construction of chronic fatigue syndrome. Health Care Women Int. 2000 Apr-May;21(3):173-85. http://www.ncbi.nlm.nih.gov/pubmed/11111464

 

General practitioners’ beliefs, attitudes and reported actions towards chronic fatigue syndrome

Abstract:

OBJECTIVE: To undertake a survey of Australian general practitioners (GPs) to explore their beliefs, attitudes and reported actions with respect to chronic fatigue syndrome (CFS).

METHOD: A random sample of 2090 Australian GPs, stratified by state, was surveyed in May-August 1995.

RESULTS: A 77% response rate was obtained. For the majority of practitioners who pursue a diagnosis of CFS, six symptoms were considered to be of significance: chronic unremitting fatigue for over 6 months; failure to recover energy after rest; reduced exercise tolerance; prostration for several days after exercise; generalised myalgia and poor concentration. Individual counselling was the most frequently used treatment. Thirty-one percent of practitioners reported that they did not believe that CFS is a distinct syndrome. Of these, 70% reported that the most likely cause of chronic fatigue was depression.

CONCLUSION: There is considerable diversity of opinion between practitioners about CFS. The diversity extends from questioning whether the syndrome even exists to different strategies for diagnosis and management.

 

Source: Steven ID, McGrath B, Qureshi F, Wong C, Chern I, Pearn-Rowe B. General practitioners’ beliefs, attitudes and reported actions towards chronic fatigue syndrome. Aust Fam Physician. 2000 Jan;29(1):80-5. http://www.ncbi.nlm.nih.gov/pubmed/10721550

 

Chronic debilitating fatigue in Irish general practice: a survey of general practitioners’ experience

Abstract:

BACKGROUND: Doctors are called upon to treat chronic debilitating fatigue without the help of a protocol of care.

AIMS: To estimate the incidence of chronic debilitating fatigue in Irish general practice, to obtain information on management strategy and outcome, to explore the attitudes of practitioners (GPs) towards the concept of a chronic fatigue syndrome (CFS), and to recruit practitioners to a prospective study of chronic fatigue in primary care.

METHOD: A total of 200 names were selected from the database of the Irish College of General Practitioners (ICGP); 164 of these were eligible for the study.

RESULTS: Altogether, 118 questionnaires were returned (72%). Ninety-two (78%) responders identified cases of chronic fatigue, giving an estimated 2.1 cases per practice and an incidence of 1 per 1000 population. All social classes were represented, with a male to female ratio of 1:2. Eleven disparate approaches to treatment were advocated. Many (38%) were dissatisfied with the quality of care delivered, and 45% seldom or hardly ever referred cases for specialist opinion. The majority (58%) accepted CFS as a distinct entity, 34% were undecided, and 8% rejected it. Forty-two (35%) GPs volunteered for a prospective study.

CONCLUSION: Chronic fatigue is found in Irish general practice among patients of both sexes and all social classes. Doctors differ considerably in their management of patients and are dissatisfied with the quality of care they deliver. Many cases are not referred for specialist opinion. A prospective database is required to accurately assess the scale of this public health problem and to develop a protocol of care.

 

Source: Fitzgibbon EJ, Murphy D, O’Shea K, Kelleher C. Chronic debilitating fatigue in Irish general practice: a survey of general practitioners’ experience. Br J Gen Pract. 1997 Oct;47(423):618-22. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1410094/ (Full article)

 

Chronic fatigue syndrome: sufferers’ evaluation of medical support

Abstract:

In response to reports of negative cooperation between sufferers of chronic fatigue syndrome (CFS) and their doctors, semi-structured interviews were conducted with sufferers from two different patient samples.

Satisfaction with support received and with medical professionals in general was low. Sufferers complained about insufficient informational as well as emotional support from their doctors, and as a consequence most opted for alternative or complementary forms of treatment.

In addition, disagreements over illness aetiology and treatment precluded effective cooperation. If satisfaction and compliance are to improve, sufferers will need more information about CFS and more support.

 

Source: Ax S, Gregg VH, Jones D. Chronic fatigue syndrome: sufferers’ evaluation of medical support. J R Soc Med. 1997 May;90(5):250-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1296257/ (Full article)