ME/cvs Vereniging

The ME/ cvs Vereniging is a Dutch association for and by those suffering from ME/CFS and their close ones. The small letters for "CVS" in its name underpins that the association wishes the medical world to stop using the name Chronic Fatigue Syndrome, which it considers stigmatizing. ("CVS" is the Dutch abbreviation for Chronic Fatigue Syndrome.)

Aims
The association's objective is:


 * To provide and disseminate information about myalgic encephalomyelitis (code G93.3 in the ICD-10)
 * To provide and disseminate information about chronic fatigue syndrome (code G93.3 in the ICD-10)
 * promote the best possible outcomes for people suffering from ME/CFS, their partners, relatives and others close to them
 * promote a clear public image of ME/CFS
 * encourage those suffering from ME/CFS, their partners, relatives and those close to them in activities aimed at improving or restoring their health and improving their living conditions

History
ME/cvs Vereniging, originally known as ME en CVS Vereniging, was founded on April 15, 2005 by Eelco van Tuyll, Rico Landman and Guido den Broeder. In 2011, Guido den Broeder left as chairman and founded ME Vereniging Nederlands.

Funding
Their funding comes from individual contributions and donations.

Patient survey
In 2019, the association released a report summarizing the results of a 2017 patient survey. This report only included responses from patients who met the SEID diagnostic criteria, as these diagnostic criteria were considered consistent with the recent report by the Gezondheidsraad (Dutch Health Council). Of those completing the survey, 94% reported a diagnosis of ME, 2.6% reported a diagnosis of CFS, no patients reported a diagnosis of SEID, and 4% reported a different diagnosis.

Online presence

 * Website
 * Facebook page
 * Twitter
 * YouTube channel
 * ME/cvs Vereniging's Science for Patients YouTube channel

Learn more

 * Zorg voor betere behandeling bij ME - 2017 patient survey