Authors' objectives:

The objective of this study was to assess and synthesize the evidence base for diagnosis and treatment of chronic fatigue syndrome/ myalgic encephalopathy (CFS/ME).

Authors' results and conclusions: The overview of the scientific knowledge is based on systematic reviews. To ensure that recently published primary studies were included an additional search was performed for RCTs and CCTs published after the last search date in the included systematic reviews. As a supplement, we searched for qualitative studies to investigate the experience of patients and health care workers. The assessment was conducted stepwise starting with 1168 abstracts and ending with 6 systematic reviews, 5569 abstracts of RCTs and CCTs and finally ending with 4 RCTs concerning adults and 3 RCTs concerning children/young people. 807 qualitative studies were identified and 18 were included. Level of documentation was done with GRADE. Diagnosis Guidelines for clinical diagnosis of CFS/ME has among others, been published by British, Australian and Canadian groups. In spite of the fact that these guidelines have been published with different aims, the most important recommendations are congruent. The recommendations for diagnosis is a summarization of the guidelines identified as there is no diagnostic gold standard. - The patient's history includes recently developed extreme fatigue of at least 6 months duration which is triggered by disproportional demands, is unpredictable, does not improve by rest or is worsened by physical or mental efforts. Additional symptoms is reduced memory/concentration, sore throat, swollen lymphnodes, painful joints and muscles, headache, sleeping problems and muscle and joints and digestive problems may occur. Some patients also have comorbidity of fibromyalgia or irritable bowel syndrome. There is often a clear cut in descriptions of symptoms before and after onset, the course is varied. - Differential diagnosis such as metabolic diseases, diabetes, coeliac disease, cancer, bipolar or other depressive conditions, neurological disease and Addisons disease have to be excluded using relevant tests and supplementary examinations. No diagnostic test can verify the diagnosis, nor point to the best treatment. Treatment The following therapies evaluated by clinical studies were identified: Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET), pharmacological treatment, immunological treatment, supplements and alternative/complementary treatment. For most of the outcomes the level of documentation is low or very low. The main outcomes are: - Cognitive Behavioural Therapy suggests an improvement in physical function and quality of life, but it is uncertain if the treatment influences mental health. - Graded Exercise Therapy suggests a reduction of fatigue, but did not document effect on depression or quality of life. Drop-out was high, especially with high intensity exercise. - There is no evidence to recommend pharmacological treatment unless there is relevant comorbidity. - The effect of immunmodulating treatment is uncertain. The treatment can give serious adverse effects. - The effect of supplements and alternative/complementary medicine is uncertain. - Hardly any studies investigated the effect of different kind of treatments for children and young people with CFS/ME - No studies have investigated the effect of treatment for the severely ill eller severely disabled (patients that can`t come to treatment).

Authors' recommendations: There are insufficient studies as to the better treatment for severely ill or disabled sufferers, the evidence base for children and young people is scarce and for the remaining sufferers the level of documentation is low or very low. The diagnostic criteria used in different studies varies, which makes comparisons difficult. Empirical studies about treatment experiences are missing. CFS/ME is a disease with subjective symptoms without objective findings and the qualitative studies show that patients feel stigmatized and mistrusted and that the doctors find diagnosing and treating CFS/ME challenging. In addition to these aspects the prevalence, prognosis and cause of CFS/ME remains unclear. There seems to be next to unlimited research needed.

Authors' methods: Systematic review

Project Status: Completed

URL for project: http://www.nokc.no/

Year Published: 2006

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: Norway

Organisation Name: Norwegian Institute of Public Health

Contact Address: Universitetsgata 2, Postbox 7004 St. Olavs plass, NO-0310 Oslo NORWAY. Tel: +47 23 25 50 00; Fax: +47 23 25 50 10;

Contact Name: Berit.Morland@nokc.no, dagny.fredheim@nokc.no

Contact Email: Berit.Morland@nokc.no, dagny.fredheim@nokc.no

Copyright: The Norwegian Knowledge Centre for the Health Services