PRESS RELEASE Hilversum/Groningen/Zwolle, The Netherlands 17 December 2008

Frequently advised treatments for patients with chronic fatigue syndrome (ME/CFS) in The Netherlands appears to lead to deterioration of their condition as often, or even more often, than improvement. This applies to cognitive behavioural therapy (CBT) and exercise therapy. Other treatments have far more positive results.

These are the findings of a study by NIVEL (Netherlands Institute for Health Research) among the ranks of the ME/CFS patient organisations. *

Most patients are dissatisfied with the way doctors diagnose CFS. They find their doctors have insufficient specific knowledge and feel they are not taken seriously enough. The three Dutch ME/CFS patient organizations hold the view that the care for ME/CFS patients must be improved considerably. They emphasize that the development of the multidisciplinary guideline should continue without further delay.

Medical guideline

Since the beginning of 2007, CBO and the Trimbos Institute are working on a medical guideline for the diagnosis, treatment, examination and management of ME/CFS. The patient organizations are looking forward to the completion of this guideline and believe that its drafting should thoroughly take into account the findings of the NIVEL study. According to these organizations, the guideline should not serve to one-sidedly promote CBT and physical training; furthermore, the guideline should not be based upon one specific clinical picture. In addition to CBT and exercise therapy, anti-depressants often appear to make patients’ symptoms worse. According to the survey, better outcomes are achieved with diets, guidance to find a balance between activity and rest, guided bedrest, and painkillers. The patient organizations plead for doctors to actively help patients to find the best possible treatment. Serious consequences

The study further reveals that the consequences of ME/CFS can be very serious. Many patients are restricted regarding to work, school and household activities, raising children, social contacts and recreation. They indicate that they need more support – in such areas as income, work, school and daily life – than they actually receive.

Almost half of all patients disagree with the outcome of medical examinations, related to various social benefits, applications for transportation provisions and home adjustments. A large percentage finds that factors as prolonged recovery time, varying physical tolerance, concentration and memory problems, pain and dizziness, have not sufficiently been recognized.

*A.J.E. de Veer and A.L. Francke, Zorg voor ME/CVS-patiënten. Ervaringen van de achterban van patiëntenorganisaties met de gezondheidszorg. (Care for ME/CFS patients. Experiences of the supporters of patient organizations with health care.) NIVEL, Utrecht 2008. The research report (in Dutch) can be downloaded at http://www.nivel.nl/pdf/Rapport-draagvlakmeting-CVS-ME-2008.pdf.

The three ME/CFS patient organizations in The Netherlands:

ME/CVS Stichting Nederland Noordse Bosje 16 1211 BG Hilversum me-cvs-stichting@zonnet.nl www.me-cvs-stichting.nl

Steungroep ME en Arbeidsongeschiktheid Bankastraat 42C 9715 CD Groningen info@steungroep.nl www.steungroep.nl

ME/CVS Vereniging Kortenhorststraat 23 8015 BW Zwolle bestuur@me-cvsvereniging.nl www.me-cvsvereniging.nl

END OF PRESS RELEASE


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