Tag: guidelines

Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development

Abstract:

Guideline development by its nature is a process and method of integration and synthesis of information, be it originating from research, evidence-based medicine, clinical findings, patient experience and/or individual narratives of an illness or disease. In the majority of cases, it can be assumed that this information and these ideas are travelling in the same direction; however, it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.

In this commentary, an example of where this might be the case has been analysed: a report published by the Scottish Public Health Network, a Health Care Needs Assessment of Services for people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). It appears from reflection and analysis of this document that this process may indeed have gone awry. We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning. This commentary seeks to highlight some of the problems, contradictions and unintended consequences of a divergence between patient perspectives and evidence-based medicine despite probably sharing the same aim, that of improving patient care and striving for better understanding and better treatments for disease.

Comment in:

Who values evidence? [J Neurol Neurosurg Psychiatry. 2014]

Chronic fatigue syndrome/myalgic encephalomyelitis: more heat, some light–directions for research and clinical practice. [J Neurol Neurosurg Psychiatry. 2014]

 

Source: Smith C, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. J Neurol Neurosurg Psychiatry. 2014 Feb;85(2):214-9. doi: 10.1136/jnnp-2012-303208. Epub 2012 Nov 17. https://www.ncbi.nlm.nih.gov/pubmed/23160704

 

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 syndrome. Committee for Science and Education, Medical Association of South Africa

Abstract:

OBJECTIVE: To acknowledge the clinical syndrome chronic fatigue syndrome (CFS) and outline the diagnostic criteria and reasonable management.

OUTCOMES: Attempt at containment of treatment cost and improvement of the quality of care of patients with CFS.

EVIDENCE: Delphi-type commentary from 20 expert clinicians and appropriate organisations. Limited literature survey.

VALUES: To clarify the reasonable management of CFS amid conflicting clinical opinion on a condition of concern to patients, funders and doctors. An adaptation of an existing guideline was sent to organisations and individuals for comment. Comments received were included in this guideline where possible.

BENEFITS, HARMS AND COSTS. To acknowledge a clinical syndrome with a reasonable approach to management considering the cost implications. No cost analysis was done.

RECOMMENDATIONS: To recommend the following: (i) diagnostic criteria for CFS; (ii) potential differential diagnoses and possible investigations; and (iii) management protocol.

VALIDATION: The draft guidelines were subjected to external review by individual doctors who are acknowledged CFS treaters, doctor groups and the patient support group. There were major disputes about the content, with the responses falling into two groups: those who do not believe CFS is a distinguishable illness, and those who do.

DEVELOPER AND FUNDING: The Committee for Science and Education, Medical Association of South Africa.

ENDORSEMENTS: Medical Association of South Africa and national health care organisations (see list at the end of the document).

Comment in: Committee to investigate chronic fatigue syndrome. [S Afr Med J. 1996]

 

Source: Chronic fatigue syndrome. Committee for Science and Education, Medical Association of South Africa. S Afr Med J. 1995 Aug;85(8):780-2. [No authors listed] http://www.ncbi.nlm.nih.gov/pubmed/8553151

 

The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group

Abstract:

The complexities of the chronic fatigue syndrome and the methodologic problems associated with its study indicate the need for a comprehensive, systematic, and integrated approach to the evaluation, classification, and study of persons with this condition and other fatiguing illnesses. We propose a conceptual framework and a set of guidelines that provide such an approach. Our guidelines include recommendations for the clinical evaluation of fatigued persons, a revised case definition of the chronic fatigue syndrome, and a strategy for subgrouping fatigued persons in formal investigations.

Comment in:

The chronic fatigue syndrome. [Ann Intern Med. 1995]

The chronic fatigue syndrome. [Ann Intern Med. 1995]

The chronic fatigue syndrome. [Ann Intern Med. 1995]

The chronic fatigue syndrome. [Ann Intern Med. 1995]

 

Source: Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953-9. http://www.ncbi.nlm.nih.gov/pubmed/7978722

 

Therapeutic guidelines in chronic fatigue syndrome

Abstract:

The treatment of CFS is not definitive up till now and it is limited both by ignorance of its causes and by different applicable operative case definitions. It has been etiopathologically related to infectious agents, neuromuscular illnesses, neuro-endocrinous-immunologic alterations and to different psychiatric disorders, particularly depressive disorders. Consequently, a great variety of therapeutic strategies have been tried, most of them with insufficient results. Among the medicamentous ones: immunity activator agents such as recombinant interleukin-2, nonspecific immunitary modulators such as seric gamma globulin, antivirus drugs such as acyclovir, muscular relaxants such as ciclobenzaprine, H2 receptor blockers and steroid and nonsteroid anti-inflammatory drugs such as ibuprofen, naproxen and fulbiprofen. Better results seem to have been obtained with antidepressants, and amfebutamone and serotonin-reuptake selective inhibitors are specially promising. Among the nonmedicamentous strategies, cognitive behavioural treatment can be effective and the so called “psychiatric management of the patient with CFS” has been proposed as a global, pragmatic, individualized, comprehensive approach which must be completed with other interdisciplinary interventions on the patient and his environment.

 

Source: Bertolín Guillén JM, Bedate Villar J. Therapeutic guidelines in chronic fatigue syndrome. Actas Luso Esp Neurol Psiquiatr Cienc Afines. 1994 May-Jun;22(3):127-30. [Article in Spanish] http://www.ncbi.nlm.nih.gov/pubmed/7484295