Tag: medical attitudes

Primary healthcare provision and Chronic Fatigue Syndrome: a survey of patients’ and General Practitioners’ beliefs

Abstract:

BACKGROUND: The current study was conducted as part of a research project into the evaluation and assessment of healthcare provision and education in Chronic Fatigue Syndrome (CFS). One aim of the study was the development of informative and educational literature for both General Practitioners (GP) and sufferers. Issues such as diagnosis, management and treatment of the syndrome should be included in information booklets written by healthcare professionals. It was important to begin the process by assessing the level of specialist knowledge that existed in typical GP surgeries. This data would then be compared to data from CFS patients.

METHOD: 197 survey booklets were sent to CFS sufferers from an existing research panel. The patients approached for the purpose of the study had been recruited onto the panel following diagnosis of their illness at a specialised CFS outpatient clinic in South Wales. A further 120 booklets were sent to GP surgeries in the Gwent Health Authority region in Wales.

RESULTS: Results from the study indicate that the level of specialist knowledge of CFS in primary care remains low. Only half the GP respondents believed that the condition actually exists.

CONCLUSION: Steps are recommended to increase the knowledge base by compiling helpful and informative material for GPs and patient groups.

 

Source: Thomas MA, Smith AP. Primary healthcare provision and Chronic Fatigue Syndrome: a survey of patients’ and General Practitioners’ beliefs. BMC Fam Pract. 2005 Dec 13;6:49. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1325235/ (Full article)

 

Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses

Abstract:
Chronic fatigue syndrome and multiple chemical sensitivity are two clusters of illnesses that are pervaded by medical, social and political uncertainty. This article examines how facts are talked about and experienced in struggles over these emergent, contested illnesses in the US. Based principally on a large archive of internet newsgroup postings, and also on fieldwork and on published debates, it finds that (1) sufferers describe their experiences of being denied healthcare and legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts; (2) institutions manage these exclusions rhetorically through exploiting the open-endedness of science to deny efficacy to new facts; (3) collective patient action responds by archiving the systematic nature of these exclusions and developing counter-tactics. The result is the maintenance of these very expensive struggles for all involved.

 

Source: Dumit J. Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses. Soc Sci Med. 2006 Feb;62(3):577-90. Epub 2005 Aug 8. http://www.ncbi.nlm.nih.gov/pubmed/16085344

 

Chronic Fatigue Syndrome: a survey of GPs’ attitudes and knowledge

Abstract:

BACKGROUND: GPs need evidence and guidance to help them diagnose and manage Chronic Fatigue Syndrome (CFS)/ME appropriately.

OBJECTIVES: The aim of this survey was to obtain baseline data and identify the factors associated with GPs’ attitudes to and knowledge of CFS/ME. The attitude of GPs to the condition is an important indicator of likely prognosis.

METHODS: A postal questionnaire was sent to 1054 GPs served by Taunton, Bristol and Gloucester laboratories. GPs’ attitudes to nine statements about CFS/ME were assessed and the factors associated with positive or negative responses were determined. Knowledge of the clinical features was also assessed.

RESULTS: 811 GPs (77%) returned the questionnaire. 48% of GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in treatment. 72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes. Three other key factors that were significantly, positively associated with GPs’ attitudes were knowing someone socially with CFS/ME, being male and seeing more patients with the condition in the last year.

CONCLUSION: Despite the publication of guidance for GPs on CFS/ME, confidence with making a diagnosis and management was found to be low. Educational initiatives and guidance for GPs should stress the importance of accepting CFS/ME as a recognisable clinical entity, as this is linked to having a positive attitude and could lead to improved confidence to make a diagnosis and treat CFS/ME patients.

 

Source: Bowen J, Pheby D, Charlett A, McNulty C. Chronic Fatigue Syndrome: a survey of GPs’ attitudes and knowledge. Fam Pract. 2005 Aug;22(4):389-93. Epub 2005 Apr 1. http://fampra.oxfordjournals.org/content/22/4/389.long (Full article)

 

A patient’s journey with myalgic encephalomyelitis

Myalgic encephalomyelitis (ME) presents patients and their general practitioners with the challenge of managing a life shaped by chronic debilitating illness, pain, and uncertainty. The notion that body limitations resulting from illness must be recognised is shown in the literature on chronic illness, but at the same time it is necessary to understand the social context of change and diversity within which illness is conceptualised. People give meaning to their illness and altered life course with reference to socioeconomic relations, cultural perceptions and beliefs, and their interactions with health and social care services.

Myalgic encephalomyelitis represents the conundrum of uncertainty in the diagnosis, treatment, and prognosis of the disease. Many of the symptoms that people present with could be indications for other diseases, making it difficult to diagnose. Moreover, there is still some debate about the existence of the disease as a clinical category. Current guidance focuses on the symptoms of fatigue and malaise, cognitive impairment, and pain. The patient’s account in this paper was collected as part of a research study on osteoarthritis of the knee. The patient, Daphne Evans, was interviewed by BNO, but the discussion centred on myalgic encephalomyelitis because she considered this condition of primary importance. Her doctor’s account was added to her own account when the paper was drafted.

 

Source: Ong BN, Evans D, Bartlam A. A patient’s journey with myalgic encephalomyelitis. BMJ. 2005 Mar 19;330(7492):648-50. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC554915/ (Full article)

 

Harmful psychiatrization

Ulrik Fredrik Malt’s response( 1 ) to my post about myalgic encephalomyelitis / chronic fatigue syndrome in the journal no. 9/2004 ( 2 ) and what he calls the ME group, is irrelevant to the core issue. Is the response really an apologia for his own views and practices, a practice that does not conform with practices at other university hospitals? Other universities conform correctly to ICD-10, which classifies myalgic encephalomyelitis / chronic fatigue syndrome as a neurological disorder (diagnostic code G93.3), and have introduced the new clinical criteria ( 3 ). It is not up to individual doctors to classify a disorder in the category that suits them. It is evident that the Malt places himself above ICD-10.

Myalgic encephalomyelitis / chronic fatigue syndrome has more than 30 years been classified as a neurological disorder and will remain so in the upcoming revision of the ICD. The psychiatrization which has been ongoing for many years, has caused major problems for those affected. Patients are ignored, rejected, distrusted, persecuted, mistreated, not taken seriously and suspected of malingering. Contagion and disability are downplayed, and many patients do not get Social Security benefits and assistance on a par with other seriously ill patients. Under the auspices of the US Department of Health a declaration has been adopted which states that “patients have been harmed as a result of disrespect, indifference and ignorance of the medical community” ( 4 ). According to the statement, one must “aggressively embark on disrespect that these patients meet both the general population and the medical community.” It stressed further that there is an urgent need for training of health professionals. In this connection healthcare professionals are advised not to read about myalgic encephalomyelitis / chronic fatigue syndrome in textbooks of psychiatry and instead read other research and literature ( 5 ).

Psychiatrization and trivialization of this suffering must end and textbooks corrected. Health authorities should urgently address this issue as they have done in England.

You can read the rest of this comment here: http://tidsskriftet.no/article/1045776

 

Source: Stormorken E.  Harmful psychiatrization. Tidsskr Nor Laegeforen. 2004 Jul 1;124(13-14):1826-7; author reply 1827. [Article in Norwegian] http://tidsskriftet.no/article/1045776 (Full article)

 

Chronic fatigue syndrome versus neuroendocrineimmune dysfunction syndrome:differential attributions

Abstract:

Since 1988, when the term chronic fatigue syndrome (CFS) was coined, considerable discussion has occurred about stigma associated with this diagnostic term. In particular, patients with CFS have felt that this term trivializes the serious nature of this disorder. A Name Change Work group, appointed by the CFS Coordinating Committee, developed an umbrella term: chronic neuroendocrineimmune dysfunction syndrome (CNDS), and proposed that there would be sub-types under this term, one being CFS. The present study examined attributions of this new umbrella term when compared with CFS.

Nurses and physician assistants (PAs) were presented a case study of a patient with symptoms of CFS. They were told that the patient had either “chronic fatigue syndrome,” “chronic neuroendocrineimmune dysfunction syndrome,” or “chronic neuroendocrineimmune dysfunction syndrome, which had formerly been called chronic fatigue syndrome.” The different terms led to different attributions, with PA respondents rating the “CNDS” label as more severe. Results suggest that a more medical sounding term (CNDS) may lead to attributions that this syndrome is a more serious, disabling illness. The policy implications of these findings are discussed.

 

Source: Jason LA, Holbert C, Torres-Harding S, Taylor RR, LeVasseur JJ, Breitinger P, LaBarbera D, Siegel L. Chronic fatigue syndrome versus neuroendocrineimmune dysfunction syndrome:differential attributions. J Health Soc Policy. 2003;18(1):43-55. http://www.ncbi.nlm.nih.gov/pubmed/15189800

 

General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study

Abstract:

OBJECTIVES: To compare general practitioners’ perceptions of chronic fatigue syndrome and irritable bowel syndrome and to consider the implications of their perceptions for treatment.

DESIGN: Qualitative analysis of transcripts of group discussions.

PARTICIPANTS AND SETTING: A randomly selected sample of 46 general practitioners in England.

RESULTS: The participants tended to stereotype patients with chronic fatigue syndrome as having certain undesirable traits. This stereotyping was due to the lack of a precise bodily location; the reclassification of the syndrome over time; transgression of social roles, with patients seen as failing to conform to the work ethic and “sick role” and conflict between doctor and patient over causes and management. These factors led to difficulties for many general practitioners in managing patients with chronic fatigue syndrome. For both conditions many participants would not consider referral for mental health interventions, even though the doctors recognised social and psychological factors, because they were not familiar with the interventions or thought them unavailable or unnecessary.

CONCLUSIONS: Barriers to the effective clinical management of patients with irritable bowel syndrome and chronic fatigue syndrome are partly due to doctors’ beliefs, which result in negative stereotyping of patients with chronic fatigue syndrome and the use of management strategies for both syndromes that may not take into account the best available evidence.

Comment in: Patient organisations in ME and CFS seek only understanding. [BMJ. 2004]

 

Source: Raine R, Carter S, Sensky T, Black N. General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ. 2004 Jun 5;328(7452):1354-7. Epub 2004 May 28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC420289/ (Full article)

 

Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US

Abstract:

We examine Gulf War illnesses–which include the fatigue, joint pain, dermatitis, headaches, memory loss, blurred vision, diarrhea, and other symptoms reported by Gulf War veterans–in relation to other medically unexplained physical symptoms such as multiple chemical sensitivity,chronic fatigue syndrome, and fibromyalgia. Our intent is to examine the diagnosis negotiations involved in these mysterious diseases, by showing the different forms of legitimacy involved in such interactions.

Factors involved in diagnostic legitimacy are: diagnostic legitimacy in the medical community, lay acceptance of the diagnosis, uncertainty in looking for causes, and social mobilization. We conclude by noting that research may not be able to find any cause for these diseases/conditions; hence, it may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process.

Such a change can alter patients’ expectations and taken-for-granted assumptions about medicine, and perhaps in turn reduce the frequency with which dissatisfied individuals form illness groups that mobilize to challenge what they see as an unresponsive medical system.

 

Source: Zavestoski S, Brown P, McCormick S, Mayer B, D’Ottavi M, Lucove JC. Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US. Soc Sci Med. 2004 Jan;58(1):161-75. http://www.ncbi.nlm.nih.gov/pubmed/14572929

 

Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia

Abstract:

Encountering patients with chronic fatigue syndrome (CFS) or fibromyalgia can cause dilemmas for physicians due to the uncertainty inherent in these illnesses. The aim of this study was to investigate: (1). How physicians in a Swedish sample describe and categorize patients with CFS and fibromyalgia; (2). What the character of CFS and fibromyalgia, with regard to diagnosing, treatment and medical knowledge/aetiology, mean to the physicians in encounters with patients; and (3). Which strategies physicians describe that they use in the encounter with these patients.

Semi-structured interviews were carried out with 26 physicians, specialists in various fields who all had some experience of either CFS or fibromyalgia. The results suggest that there is a discrepancy between the ideal role of the physician and reality in the everyday work in interaction with these patients. This may lead to the professional role being questioned. Different strategies are developed to handle the encounters with these patients. The results also illuminate the physician’s interpretations of patients in moralising terms. Conditions given the status of illness were regarded, for example, as less serious by the physicians than those with disease status. Scepticism was expressed regarding especially CFS, but also fibromyalgia.

Moreover, it is shown how the patients are characterised by the physicians as ambitious, active, illness focused, demanding and medicalising. The patient groups in question do not always gain full access to the sick-role, in part as a consequence of the conditions not being defined as diseases.

 

Source: Asbring P, Närvänen AL. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med. 2003 Aug;57(4):711-20. http://www.ncbi.nlm.nih.gov/pubmed/12821018

 

Chronic fatigue syndrome – medical fact or artifact

Abstract:

Despite extensive investigation, the enigma of Chronic Fatigue Syndrome (CFS) continues to confound medical researchers. It is suggested that this may be due to two impediments inherent in their overall approach to the problem.

Firstly, although fatigue is central to CFS, medical scientists appear not to understand what fatigue itself really is, nor what is its purpose or mode of function. A functional definition of fatigue is suggested to help resolve this.

Secondly, physicians and other researchers – psychologists and alternative medicine practitioners – fail to observe an elementary and fundamental procedure of clinical medicine, namely, that of properly examining their patients before making a diagnosis or providing treatment. The notion of the ‘black hole’ of medicine is introduced. Recognizing the existence of these impediments is considered a self-evident precondition for further significant progress being made in this field.

 

Source: Eidelman D. Chronic fatigue syndrome – medical fact or artifact. Med Hypotheses. 2003 Jun;60(6):840-2. http://www.ncbi.nlm.nih.gov/pubmed/12699708