Tag: medical attitudes

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

 

AIDS and CFS/ME: a tale of two syndromes

Abstract:

Both HIV/AIDS and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) presented major challenges for medicine, science and society. This article explores what could have impeded investigation of–and specifically pharmaceutical engagement with–CFS/ME, in contrast to the impressive achievements seen in HIV/AIDS. It explores the obstruction of mind-body dualism in a historical context, and examines some of the possible obstacles to pharmaceutical enquiry. Nothing of real substance is identified that would justify the lack of investment and interest in solutions for patients with CFS/ME.

Comment in: AIDS and CFS/ME. [Clin Med (Lond). 2003]

 

Source: Pinching AJ. AIDS and CFS/ME: a tale of two syndromes. Clin Med (Lond). 2003 Jan-Feb;3(1):78-82. http://www.ncbi.nlm.nih.gov/pubmed/12617422

 

Doctor accused of “interfering” in girl’s treatment is cleared by GMC

A consultant paediatrician who disagreed with the parents of a girl with chronic fatigue syndrome about her treatment and obtained her medical records without their consent has been cleared of serious professional misconduct by the General Medical Council. The case resumed last week, having been adjourned in June (29 June, p 1539).

Christopher Cheetham, consultant paediatrician at Wycombe General Hospital, continued to involve himself in the case of the 12 year old girl after her parents, named only as Mr and Mrs B, made it clear they no longer wanted him to do so.

Dr Harvey Marcovitch, editor of Archives of Disease in Childhood, said the case had caused concern among paediatricians about their child protection role. “A lot of paediatricians have been contacting the college [the Royal College of Paediatrics and Child Health], saying they have a terrible dilemma when families won’t cooperate with them in knowing how far they’re allowed to go in spreading information.”

He said the college’s president, Professor David Hall, was seeking a meeting with the GMC president, Professor Graeme Catto, to discuss the issue.

The girl, now 17, was confined to bed for two years. Social services convened two child protection case conferences but decided she was not at risk.

Dr Cheetham recommended an inpatient programme of psychotherapy and physiotherapy. Mr and Mrs B disagreed, believing her illness to be organic, and told him by letter that they no longer wanted him involved in their daughter’s care.

The family’s GP called in Dr Nigel Speight, a consultant paediatrician from Durham with a special interest in chronic fatigue syndrome. He agreed with Mr and Mrs B that their daughter should be treated at home under the care of her GP.

Dr Cheetham sought to involve social services and continued to insist, in letters to Dr Speight and others, that the girl was being deprived of proper treatment.

Dr Cheetham’s counsel argued that the Children Act 1989, which provides for intervention when a child is thought to be suffering or likely to suffer significant harm, justified Dr Cheetham’s actions.

Taking into account the circumstances of the girl’s condition and management as known to Dr Cheetham at the time and his “integrity, expertise, and reputation as a senior paediatrician,” the GMC’s professional conduct committee “could not feel sure” that he had no reasonable cause to suspect significant harm. He could not, therefore, be said to have no right to intervene.

The committee said the Bs were “intelligent, loving, and devoted parents” who were entitled to have the treatment of their choice for their child. But that did not nullify the right of a doctor with legitimate concerns for his former patient.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124209/

 

Source: Dyer C. Doctor accused of “interfering” in girl’s treatment is cleared by GMC. BMJ. 2002 Sep 28;325(7366):673. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124209/ (Full article)

 

Chronic fatigue syndrome/myalgic encephalitis

Comment in: Chronic fatigue syndrome/ME. [Br J Gen Pract. 2002]

Comment on: Doctors and social epidemics: the problem of persistent unexplained physical symptoms, including chronic fatigue. [Br J Gen Pract. 2002]

 

In their editorial (Journal, May 2002), Stanley et al argued that chronic fatigue should be categorised under ‘persistent unexplained physical symptoms’, and that these are often the result of the somatisation of ‘unhappiness’ and the misinterpretation of ‘normal functioning’. However, their analysis contained some notable flaws.

Firstly, there is more to chronic fatigue syndrome (CFS) than ‘tiredness and its synonyms’ and to ignore symptoms, such as vertigo, nausea, and photophobia, both misrepresents and trivialises this illness.

Secondly, the authors alluded to widespread somatisation, despite the lack of evidence that this is a major problem in relation to CFS. The suggestion that this is a homogeneous population of unhappy, prejudiced, attention-seekers is difficult to reconcile with evidence-based medicine, and the subtle accusations of mass exaggeration are stigmatising and unhelpful.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf

 

Source: Goudsmit E. Chronic fatigue syndrome/myalgic encephalitis. Br J Gen Pract. 2002 Sep;52(482):763; author reply 763-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf (Full article)

 

Chronic fatigue syndrome/myalgic encephalitis

Comment on: Doctors and social epidemics: the problem of persistent unexplained physical symptoms, including chronic fatigue. [Br J Gen Pract. 2002]

 

The editorial in the May 2002 issue by Drs Stanley, Peters and Salmon1 questions the validity of the report to the Chief Medical Officer stating that chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) ‘is indeed a chronic illness meriting significant NHS resources, including the unreserved attention of the medical profession.’ They suggest that CFS/ME may be a ‘social epidemic’ where symptoms are generated by psychogenic mechanisms. They set high standards for discussions of these issues, advocating that information ‘must be interpreted within a rigorous scientific framework such as that afforded by the methods of qualitative research.’ Let us do just that. There have been repeated reports of objectively measurable physiological changes in CFS/ME.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf

 

Source: Pall ML. Chronic fatigue syndrome/myalgic encephalitis. Br J Gen Pract. 2002 Sep;52(482):762; author reply 763-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf (Full article)

 

Chronic fatigue syndrome/myalgic encephalitis

Comment on: Doctors and social epidemics: the problem of persistent unexplained physical symptoms, including chronic fatigue. [Br J Gen Pract. 2002]

 

Readers of your editorial of May 2002 may easily gain the impression that the medical profession’s ‘established scientific methods’ have shown that CFS/ME is not a real illness and that people with CFS/ME are not really ill but are simply unhappy.

Such a perception of CFS/ME runs strongly counter to our experience at the registered charity, Westcare UK. Over the past 13 years we have been offering, with beneficial results, professional help to well over 700 patients with CFS/ME.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf

 

Source: Sykes R. Chronic fatigue syndrome/myalgic encephalitis. Chronic fatigue syndrome/myalgic encephalitis. Br J Gen Pract. 2002 Sep;52(482):762-3; author reply 763-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf (Full article)