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National Collaborating Centre for Primary Care (UK). Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet]. London: Royal College of General Practitioners (UK); 2007 Aug. (NICE Clinical Guidelines, No. 53.)

Cover of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy)

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet].

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Preface

The publication of this guideline presents an opportunity to improve care for people with CFS/ME. In the past their needs have too often been overlooked, and this situation needs to change.

Several factors have contributed to the neglect of CFS/ME. Firstly, the illness is poorly understood. There is no generally accepted theory about its cause or causes, and the symptoms can be diverse, with wide variations both between individuals and in each person over time. This creates further difficulties when attempting to define CFS/ME for the purpose of making a diagnosis. Secondly, there is only limited epidemiological evidence on the numbers of people who develop CFS/ME and on the natural history of the illness. As a result, the available therapies are few, evidence of effectiveness is limited to people with mild to moderate CFS/ME, and access to expert therapists has often been difficult.

These factors have meant that people with CFS/ME have sometimes been unable to obtain suitable care. The guideline development group were concerned that some patients with severe CFS/ME were housebound and received little or no care or support, while many others with mild or moderate CFS/ME had not been diagnosed or were unable to access potentially effective care. A recent two-year programme to set up demonstration services has shown what can be achieved, and we wish to encourage development of care based on the experience of these schemes.

A further problem created by the lack of adequate research evidence is the sometimes widely divergent and hotly contested beliefs about CFS/ME, including those about its cause, whether it is more than one illness, and which approaches suit which patients. Development of recommendations about the cause of CFS/ME was outside the scope of the guideline.

In developing the guideline, we kept in mind the overall goal of improving care for people with CFS/ME, that is, improving diagnosis, enabling patients to receive therapy appropriate for, and acceptable to them, and providing information and support, with the patient’s preferences and views firmly driving decision-making. Rather than aligning ourselves with one or other perspective on CFS/ME, we have sought to provide practical guidance for professionals and patients. We strongly recommend the same practical and pragmatic approach to professionals and patients themselves.

Professor Richard Baker

Chair, Guideline Development Group

Copyright © 2007, Royal College of General Practitioners.
Bookshelf ID: NBK53576
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