ME Vereniging Nederland

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Revision as of 11:35, September 16, 2019 by Guido den Broeder (talk | contribs) (→‎History: joined the DBC)

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".[1] The association is a member of the Dutch Brain Council[2] and the Patiëntenfederatie Nederland. Its position is that ME is unrelated to CFS and SEID.[3][4]

Aims[edit | edit source]

Activities[edit | edit source]

The ME Vereniging Nederland irregularly publishes a digital newslettter called MEling.

Several projects are carried out by the Stichting ME Research:

  • Doorlopende Enquête Patiëntenperspectief (Continuous Patient Perspective Survey)[5]
  • Richtlijn voor Myalgische Encefalomyelitis (Guideline for Myalgic Encephalomyelitis)[6]
  • 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[edit | edit source]

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

Notable people[edit | edit source]

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[edit | edit source]

History[edit | edit source]

February 2016, the association joined the Dutch Brain Council.[7]

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.[3]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ME Vereniging Nederland, about
  2. Organization overview, Dutch Brain Council, retrieved 20190916
  3. 3.0 3.1 "Patiëntenorganisaties ME/CVS" (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March
  4. ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September
  5. G. den Broeder (2015), "Doorlopende Enquête Patiёntenperspectief 2012-2014", Stichting ME Research, 9 September
  6. G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May
  7. ME Vereniging Nederland, "ME Vereniging Nederland aangesloten bij Dutch Brain Council", news item, 16 February