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ME/CVS Vereniging

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The ME/CVS Vereniging (ME/CFS Association) was the patient association for myalgic encephalomyelitis / chronic fatigue syndrome in the Netherlands during 2005-2011.[1]

Goals

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.[2] The association also aimed to combat prejudice and discrimination[3][4][5] and to foster patient contact. In addition, the association stimulated, reviewed[6] and supervised[7] scientific research, and together with other patient organizations represented patients in the development of protocols and guidelines.[8] The ME/CVS Vereniging published the magazine Lees ME[9] (Read ME), as well as leaflets, brochures, an electronic newsletter, etc.

History

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.[10] A number of patients concluded that the advice had been ignored and started the ME/CVS Vereniging on April 15, 2005.[11] 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.[7]

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.[8] The first Dutch insurance protocol for CFS, published in 2007[12], was severely criticized by the ME/CVS Vereniging, as was the NICE Guideline for England and Wales[13], alleging that both are misrepresenting the disorder and putting undue emphasis on behavioral therapies.[14][15] 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.[16][17]

The ME/CVS Vereniging was mentioned on most internet pages that deal with ME/CFS and/or patient organizations.[18] It ran the largest ME/CFS patient hyve on the Dutch Hyves.[19]

Finance

Financially, the association depended on membership fees, donations, gifts and project subsidies.[20] The standard contribution per member was 25 Euro annually.

Lees ME

Lees ME was the journal of the ME/CVS Vereniging.[9] 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.

Educational Films

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

External links

References

References:
  1. ↑ NPCF (2008), "Gids Patiënteninformatie 2008" (Patient information guide)
  2. ↑ ME/CVS Vereniging, "Globaal Beleidsplan 2006-2008", 2005 (policy plan)
  3. ↑ "ME is géén aanstellerij", Nederlands Dagblad, May 10, 2005
  4. ↑ "ME-patiënten binden de strijd aan met vooroordelen", LVA, 2006 ((ME patients start battle against prejudice; national disability association)
  5. ↑ Arnoldus RJW, "Diagnose als daad" (discussion), with a reply by Huibers M and Wessely S, Maandblad Geestelijke volksgezondheid, 2007, 7/8 580-583
  6. ↑ Den Broeder G, "Testen op ME/CVS", Lees ME #5, 2008, 37-41 (testing for ME/CFS)
  7. ↑ 7.0 7.1 Arnoldus RJW, "De beste stuurlui staan aan wal...", Lees ME #1, 2006, 9-14
  8. ↑ 8.0 8.1 3B Platform, CG-Raad (Chronic ill and Handicapped Council)
  9. ↑ 9.0 9.1 "Lees ME", ME/CVS Vereniging, ISSN 1873-8931 (Read ME)
  10. ↑ De Graaf strategie- & beleidsadvies B.V., "Heden Wij. Quik-scan naar het functioneren van de ME-stichting Nederland", 2003
  11. ↑ Trade register, Chamber of Commerce
  12. ↑ Gezondheidsraad, "Verzekeringsgeneeskundige protocollen. Chronische-vermoeidheidssyndroom. Lumbosacraal radiculair syndroom", 2007, #12
  13. ↑ NICE CG53 National Institute for Health and Clinical Excellence, "Guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)", London, 2007, ISBN 1846294533
  14. ↑ Den Broeder G, "Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom", Lees ME #2, ME/CVS Vereniging, 2007, 44-45
  15. ↑ Den Broeder G, "NICE Guideline", Lees ME #3, ME/CVS Vereniging, 2007, 32-35
  16. ↑ ZonMw CFS programme
  17. ↑ Schipper DM, Burgers JS (2007), "Rapport knelpuntenanalyse richtlijn chronisch vermoeidheidssyndroom", Kwaliteitsinstituut voor de gezondheidszorg CBO (Bottleneck analysis report, guideline CFS)
  18. ↑ Kiesbeter.nl
  19. ↑ 300th member for Hyve ME/CVS Vereniging, July 2008
  20. ↑ Kamphuis HCM, Stukstette MJPM, Frijters JPM, Sonneveld RE, Kool RB, "ME/CVS Vereniging. Uw organisatie gespiegeld", Verwey-Jonker Instituut / Prismant, 2007; see also the sector report
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