Severe and very severe patients with chronic fatigue syndrome: perceived outcome following an inpatient programme

The Chronic Fatigue Syndrome (CFS) Service within the Essex Neuroscience's Centre has been developing since 1990. The service was established as a comprehensive diagnostic and management service in July 1994. From May 1990 to March 1998, 318 patients with CFS were admitted into the programme and since November 1994, 1189 patients seen as outpatients. A previous survey indicated a positive perceived change in level of ability following the inpatient programme for all levels of CFS from mild to very severe. Of those admitted since 1990, 14% (43/318) were severely affected (extremely restricted mobility) and 9% (29/318) very severely affected (totally bedbound). Most studies on CFS do not include the more severe expressions of the disease; therefore, this descriptive paper aims to show the perceived outcome of these more severely affected patients following the inpatient programme. In particular, the eventual diagnosis, the specific approach to treatment and management and grading of patients will be described and the potential influence of the programme presented. The patients not diagnosed with CFS on discharge appeared to do least well at follow up