ME Vereniging Nederland

The ME Vereniging Nederland (ME Association Netherlands) is the national association of people with myalgic encephalomyelitis in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion". Its position is that ME is a brain disorder, previously considered nonparalytic poliomyelitis, unrelated to CFS and SEID. The association is a member of the Dutch Brain Council and the Patiëntenfederatie Nederland.

Activities
For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (National ME information day), formerly organized by MEdivera, bringing together patients, advocates, doctors and researchers. Partipants included Guido den Broeder, Johannes Peperkamp, René Tisscher, Frank Twisk, Ruud Vermeulen, Frans Visser and Theo Wijlhuizen.

The ME Vereniging Nederland has irregularly published a digital newslettter called 'MEling'.

Several projects are carried out by the Stichting ME Research:
 * Doorlopende Enquête Patiëntenperspectief (Continuous Patient Perspective Survey)
 * Richtlijn voor Myalgische Encefalomyelitis (Guideline for Myalgic Encephalomyelitis)
 * Wetenschap voor Patiënten (Science for Patients)

The association has on various occasions occupied a boot as part of the Hersenstraat (brain street), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.

Funding
The association doesn't receive any funding from the Dutch government.

Notable people

 * Guido den Broeder (Founder)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.

Online presence

 * Website
 * Facebook
 * Twitter
 * YouTube (DossierME)

History
The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate Guido den Broeder. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.

Learn more

 * Wikisage - ME Vereniging Nederland