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The association aimed to advocate the interests of all patients and their kin in the widest sense of the word. Priority in the policy plan for 2006-2008 was to provide information, since according to the association there was a serious lack of knowledge about ME/CFS in the Netherlands. The association also aimed to combat prejudice and discrimination and to foster patient contact. In addition, the association stimulated, reviewed and supervised scientific research, and together with other patient organizations represented patients in the development of protocols and guidelines. The ME/CVS Vereniging published the magazine Lees ME (Read ME), as well as leaflets, brochures, an electronic newsletter, etc.
In 2003, the ME Stichting (ME Foundation, now ME/CVS Stichting Nederland), founded in 1987, was advised to transform into a democratic organization. According to an independent bureau, it did not properly look after the interests of the patients. A number of patients concluded that the advice had been ignored and started the ME/CVS Vereniging on April 15, 2005. Three years later, the association had 300 members.
Role in ME/CFS guidance in the Netherlands
A research project supervised by the ME/CVS Vereniging suggested poor knowledge of ME/CFS among physicians.
The Vereniging participated in a platform where patient organizations for various disorders aimed to develop a common policy with regard to the development of guidelines and protocols. The first Dutch insurance protocol for CFS, published in 2007, was severely criticized by the ME/CVS Vereniging, as was the NICE Guideline for England and Wales, alleging that both are misrepresenting the disorder and putting undue emphasis on behavioral therapies. The ME/CVS Vereniging participated in the production of a Dutch multidisciplinary guideline for CFS, which was due in 2008/9, a.o. by sharing authorship of chapters on criteria and tests and by providing information on patient experience.
Financially, the association depended on membership fees, donations, gifts and project subsidies. The standard contribution per member was 25 Euro annually.
Lees ME was the journal of the ME/CVS Vereniging. New issues appeared about three times a year. The journal featured information, commentaries, interviews, columns, human interest stories, as well as scientific articles, reviews and overviews.
In 2006 the ME/CVS Vereniging asked students from the Hogeschool Rotterdam to make an educational film on ME/CFS. The film features medical expert Dr. Ruud Vermeulen (CVS Research Centrum, Amsterdam) and patients Christine van Reeuwijk and Arno Hogendoorn. On YouTube the film received the highest possible rating. A new group of students made a second film for the ME/CVS Vereniging in 2008.
Books by members
- Van Reeuwijk C, "Wie weet morgen. Over leven met een minimum aan energie", Narratio, 2003, ISBN 9052632014
- Schonckert M, "Meer dan moe. Een andere visie op ME/CVS", Houtekiet, 2006, ISBN 9052408718