Development and pilot phase of a European MS register.

The MS-ID (Multiple Sclerosis Information Dividend) project was initiated by the European Multiple Sclerosis Platform (EMSP) in 2007 in order to identify and address major inequalities of MS treatment and care and thus eliminate disparities across the EU. One major approach to reach these goals in the longer term is the implementation of a European MS register for MS. The feasibility of an EU MS register was piloted among five countries (Germany, Iceland, Poland, Romania and Spain). Each country liaised with one documentation centre. Countries and test centres were both chosen in a way that a heterogeneous health care structure was provided. After reaching consensus about the data set, comprehension and acceptability of the two questionnaires-representing both the physician's and the patient's perspective-were tested with 20 MS patients in each country. In a 6-month data collection period, data from 547 patients were recorded. Most sections of the questionnaires were available for more than 90% of patients. The results obtained from the pilot phase of the European MS register indicate that it is feasible to collect standardized data across Europe. Thus, the European MS register may be a valuable instrument to compare treatment and care of MS across countries, estimate the cost of MS in Europe and monitor the implementation of and adherence to guidelines. It may help to reduce the disparities in MS care and treatment throughout Europe and eventually improve the quality of life of people with MS.

The prevalence of chronic fatigue syndrome in Iceland - a national comparison by gender drawing on four different criteria.

The study was carried out to estimate the prevalence of chronic fatigue syndrome (CFS) in Iceland. No previous prevalence studies known to us have been undertaken in Iceland or in Scandinavia. A 95-item custom-made questionnaire was sent to 4000 randomly selected people. The response rate was 63%. The questionnaire was constructed to include questions on all the items found in the four most common criteria for diagnosing CFS; the criteria being Australian, British and American. Results show very different prevalences according to the criteria used. The prevalence ranged from 0 to 4.9%, with the most established criteria yielding a prevalence of 1.4%. Re-test validity of the questionnaire was good, the following results are based on the selection criteria by Fukuda et al. (Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Int Med 1994;121:953-9). Women were in a majority (78%); their mean age was 44, they were fully employed and worked long hours. They believed that the onset of their symptoms was stress related. The type of work was unskilled in the majority of cases. A significant proportion of the males felt a constant buzzing in their ears (P < 0.05). Food suppliants were used daily by significantly more women than men (P < 0.01). Men had more frequently phobic symptoms (P < 0.001) than did women. Differences were found in the prevalence of phobia and panic (P < 0.001) between women in the CFS group compared to healthy ones. A positive correlation was found in the prevalence of phobia between women in the CFS group and those with Iceland Disease.