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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 inform and raise awareness
History
The ME/cvs Vereniging is a continuation of the ME en CVS Vereniging which was founded 15 April 2005, later renamed to ME/CVS Vereniging. When in 2011 the decision was made to disband the ME/CVS Vereniging and found the ME Vereniging Nederland in its stead, some members and former members lead by Rob Wijbenga did not agree. In a separate meeting they chose to continue some of the old association's activities and to relax the membership requirements. Wijbenga became chairman. Since he lost his position on the board a few years later, the chair has remained unoccupied. Wijbenga has instead represented the Groep ME-Den Haag.[1]
The association now supports the 2018 advice of the Dutch Health Council, which defines ME/CFS as SEID, and has tried to educate general practitioners with that document.[1]
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.[2] This report only included responses from patients who met the SEID diagnostic criteria, as these diagnostic criteria were considered consistent with reports by the Gezondheidsraad (Dutch Health Council).[2]
Online presence
The ME/cvs Vereniging has a significant following on the social media, resulting in lively discussions.
- ME/cvs Vereniging Website
- ME/cvs Vereniging Facebook page
- ME/cvs Vereniging Twitter
- ME/cvs Vereniging YouTube channel
- Their 'Science for Patients' YouTube channel
Learn more
- Zorg voor betere behandeling bij ME - 2017 patient survey
References
- ↑ 1.0 1.1 "Patiëntenorganisaties ME/CVS" (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March
- ↑ 2.0 2.1 Corsius, L.; Crijnen, B.; Hogeweg; Kuijper (Sep 2019). "Zorg voor betere behandeling bij ME". https://www.me-cvsvereniging.nl/sites/default/files/documenten/Rapport%20Zorg%20voor%20betere%20behandeling.pdf.