Category: Medical Care

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

 

Editorial on CFS was biased, inaccurate, and misleading

EDITOR—As a member of the chief medical officer’s working group on chronic fatigue syndrome, I consider that Straus has failed to appreciate the difficulties of deciding what constitutes evidence in an illness as uncertain and heterogeneous as this.1 He also misunderstood, or took out of context, some of the key conclusions and recommendations in the chief medical officer’s report.

Although it was agreed that evidence should not just be limited to the results of randomised controlled trials, the findings of the York systematic review were frequently cited. It was therefore disingenuous of Straus to state that information from this review did not influence the report’s conclusions about a wide range of therapeutic interventions. It did.

Equally, it would have been a serious omission if the report had failed to refer to the feedback from patients contained in three large surveys on attitudes to management, as well as two events where patients and carers met with the working group. All three surveys concluded that graded exercise as is currently being done made more people worse than any other intervention. Pacing, however, was found to be beneficial by around 90% of respondents. By dismissing such views as anecdote, Straus fails to appreciate that the Department of Health is encouraging patients to enter into a therapeutic relationship with the medical profession in the management of chronic conditions such as this.2

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122848/

 

Source: Shepherd C. Editorial on CFS was biased, inaccurate, and misleading. BMJ. 2002 Apr 13;324(7342):914. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122848/ (Full article)

 

Recognising chronic fatigue is key to improving outcomes

Comment in: Caring for patients with chronic fatigue syndrome. Conclusions in CMO’s report are shaped by anecdote not evidence. [BMJ. 2002]

 

The government has finally issued its long awaited report on the management of chronic fatigue syndrome (also known as myalgic encephalomyelitis, or “ME”), after delaying publication earlier this month because several committee members resigned (5 January, p 7).

The report says that health professionals should recognise the condition as a chronic illness and that early recognition is key to improving outcomes.

Speaking at the launch, chief medical officer Professor Liam Donaldson acknowledged that the three years spent drawing up the report had been “enormously difficult, complex, and at some times controversial.”

“I’ve received a large amount of correspondence about this,” he said, admitting, “I’m a little surprised we have been able to get such a comprehensive and valuable report.”

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122065/

 

Source: Eaton L. Recognising chronic fatigue is key to improving outcomes. BMJ. 2002 Jan 19;324(7330):131. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122065/ (Full article)

 

Caring for patients with chronic fatigue syndrome. Conclusions in CMO’s report are shaped by anecdote not evidence

Comment on: Recognising chronic fatigue is key to improving outcomes. [BMJ. 2002]

 

In 1998, the chief medical officer of England and Wales commissioned a working group to advise on best practice guidelines to improve the quality of care and treatment for people with chronic fatigue syndrome/myalgic encephalomyelitis. Now issued, the group’s report reflects the good efforts of the scholars, practitioners, patients, and advocates who joined to address this complex matter.1

Given the controversies surrounding chronic fatigue syndrome, it is not surprising that the report admits to broad domains of disagreement among its members. If anything, it is remarkable that most of the original group weathered the undertaking, as there were resignations both among patients who deemed the evolving product insufficiently sympathetic and among academic practitioners who chafed at recommendations untempered by data.

The report identifies the sentinel issues that concern patients and practitioners alike: how one makes the diagnosis of chronic fatigue syndrome; the treatments to consider; and research that remains to be done. Unfortunately, despite more than 2000 relevant papers indexed on PubMed since chronic fatigue syndrome was first named in 1987, the group’s conclusions appear more shaped by anecdote than by evidence. In particular, major systematic reviews, including the recent one by Whiting et al, are not cited and do not seem to have significantly informed the guidelines.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122056/

 

Source: Straus SE. Caring for patients with chronic fatigue syndrome. Conclusions in CMO’s report are shaped by anecdote not evidence. BMJ. 2002 Jan 19;324(7330):124-5. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122056/ (Full article)

 

Chronic fatigue report delayed as row breaks out over content

The government’s long awaited report on the treatment of chronic fatigue syndrome could be in jeopardy after four key members resigned from the working group.

The move throws doubt on the validity of the report, which was due to be published in the first week of January. As the BMJ went to press, the chief medical officer, Liam Donaldson, had postponed its launch on 4 January 2002.

A total of 10 people from the original working group have resigned for various reasons since it was set up in 1998. The most recent resignations were highlighted in a written question by the Countess of Mar to health minister Lord Hunt on 17 December.

Two psychiatrists, a public health doctor, and a nurse therapist have resigned, saying that the report plays down the psychological and social aspects of the condition and concentrates on a medical model. Two patients are understood to have also resigned recently.

The group was set up to consider how best the NHS could care for people with the syndrome, also known as myalgic encephalomyelitis or “ME.”

But with so little still known about what causes the syndrome, how to diagnose it, and how best to treat it, it is understood that the report fails to provide the straightforward answers doctors may have hoped for.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1121974/

 

Source: Eaton L. Chronic fatigue report delayed as row breaks out over content. BMJ. 2002 Jan 5;324(7328):7. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1121974/ (Full article)

 

Patients’ perceptions of medical care in chronic fatigue syndrome

Abstract:

This study investigated perceptions of medical care among patients with chronic fatigue syndrome (CFS) referred to a specialist clinic. Sixty-eight patients completed a questionnaire survey on their overall satisfaction with medical care received since the onset of their illness, and their views on specific aspects of care.

Two-thirds of patients were dissatisfied with the quality of medical care received. Dissatisfied patients were significantly more likely to describe delay, dispute or confusion over diagnosis; to have received and rejected a psychiatric diagnosis; to perceive doctors as dismissive, skeptical or not knowledgeable about CFS and to feel that the advice given was inadequate or conflicting.

Satisfied patients were significantly more likely to perceive doctors as caring, supportive and interested in their illness; to state that they did not expect their doctors to cure CFS and to perceive their GP or hospital doctor as the source of greatest help during their illness. Many patients were critical of the paucity of treatment, but this was not associated with overall satisfaction.

The findings suggest that medical care was evaluated less on the ability of doctors to treat CFS, and more on their interpersonal and informational skills. Dissatisfaction with these factors is likely to impede the development of a therapeutic doctor-patient alliance, which is central to the effective management of CFS. The findings suggest a need for better communication and better education of doctors in the diagnosis and management of CFS.

 

Source: Deale A, Wessely S. Patients’ perceptions of medical care in chronic fatigue syndrome. Soc Sci Med. 2001 Jun;52(12):1859-64. http://www.ncbi.nlm.nih.gov/pubmed/11352411

 

Chronic fatigue syndrome: gender differences in the search for legitimacy

Abstract:

This study employs qualitative research methods to describe and compare the experiences of men and women with chronic fatigue syndrome (CFS), focusing on respondents’ self-perceived illness experience and relationship with medical practitioners. Data were collected from 59 respondents (18 male, 41 female) in telephone interviews using an open-ended focus interview schedule. While respondents explained the causes of the disease in ways that were largely gender appropriate, they did not experience the disease itself in gender different ways. The evidence of the study points to a clear dichotomy between ways in which men and women experience the disease and differences in the ways in which they are treated by the medical profession.

 

Source: Clarke JN. Chronic fatigue syndrome: gender differences in the search for legitimacy. Aust N Z J Ment Health Nurs. 1999 Dec;8(4):123-33. http://www.ncbi.nlm.nih.gov/pubmed/10855087

 

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

 

Approaches to coping with chronic fatigue syndrome (CFS)

Abstract:

The 1994 approach to the definition of Chronic Fatigue Syndrome (CFS) describes a severe disorder with unknown etiology and pathophysiology. It results in substantial reduction in previous levels of occupational, educational, social, or personal activities. Most patients cannot continue their usual lifestyle. No causal treatments or other therapies suitable for all patients exist so far.

Therefore it was intended to identify approaches to an effective disease management by the long time escort and observation of a CFS support group. CFS should be diagnosed according to the actual CDC guidelines. Conditions with similar symptoms explaining chronic fatigue have to be ruled out first. Then an individually shaped disease management comprising of different components plays a central role in the coping process. Medical long time care performed by a general practitioner and the membership in a suitable support group are integrated within this approach.

 

Source: Stark FM, Sobetzko HM. Approaches to coping with chronic fatigue syndrome (CFS). Zentralbl Hyg Umweltmed. 1999 Aug;202(2-4):179-90. http://www.ncbi.nlm.nih.gov/pubmed/10507127

 

Achieving a patient-centred consultation by giving feedback in its early phases

Abstract:

The traditional medical consultation comprises history, examination, and investigations, followed by explanation to the patient of diagnosis and management. In the course of studying a series of tape-recorded consultations in a specialist medical clinic for chronic fatigue, we have observed a different structure. In some consultations, those categorized as more ‘patient-centred’, doctors introduced explanation and education into the early history-taking stage. This strategy is contrasted with the traditional approach, where the doctor only elicits information during the history, and gives an explanation later. The ‘early feedback’ strategy may result in patients with chronic illnesses achieving greater understanding of their symptoms. We discuss the implication of these findings for medical training.

 

Source: Hak T, Campion P. Achieving a patient-centred consultation by giving feedback in its early phases. Postgrad Med J. 1999 Jul;75(885):405-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1741284/ (Full article)