Tag: medical attitudes

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)

 

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