User:Guido den Broeder/ME/CVS Vereniging

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The ME/CVS Vereniging (ME/CFS Association) is one of the three patient organizations for Chronic fatigue syndrome/myalgic encephalomyelitis and post-viral fatigue syndrome in the Netherlands.[1]

Contents

[edit] Goals

The association aims 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 is to provide information, since according to the association there is a serious lack of knowledge about ME/CFS in the Netherlands.[2] The association also aims to combat prejudice and discrimination[3][4][5] and to foster patient contact. In addition, the association stimulates, reviews[6] and supervises[7] scientific research, and together with other patient organizations represents patients in the development of protocols and guidelines.[8] The ME/CVS Vereniging publishes the magazine Lees ME[9] (Read ME), as well as leaflets, brochures, a digital newsletter, etc.


[edit] 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] By April 2008, the association had 290 members.

[edit] 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 participates in a platform where patient organizations for various disorders aim 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 critised 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 participates in the production of a Dutch multidisciplinary guideline for CFS, which is due in 2008, a.o. by sharing authorship of chapters on criteria and tests.[16][17]

The ME/CVS Vereniging is mentioned on most internet pages that deal with ME/CFS and/or patient organizations.[18]

[edit] Finance

Financially, the association depends on membership fees, donations, gifts and project subsidies. [19] The standard contribution per member is 25 Euro annually.

[edit] Lees ME

Lees ME is the journal of the ME/CVS Vereniging.[9] New issues appear three times a year. The journal features information, commentaries, interviews, columns, human interest stories, as well as scientific articles, reviews and overviews.

[edit] Educational Film

In 2006 the ME/CVS Vereniging asked students from the Hogeschool Rotterdam to make an educational film on ME/CFS. In the film, a medical expert and two patients talk about ME/CFS. The main cast of the film are Dr. Ruud Vermeulen (CVS Research Centrum, Amsterdam), Christine van Reeuwijk (patient and author of the Book "Wie weet morgen" and Arno Hogendoorn (patient).[20] On Youtube the film has the highest possible ranking.

[edit] Books by members

  • Van Reeuwijk C (2003), "Wie weet morgen. Over leven met een minimum aan energie", Narratio, ISBN 9052632014
  • Schonckert M (2006), "Meer dan moe. Een andere visie op ME/CVS", Houtekiet, ISBN 9052408718

[edit] References

  1. ^ NPCF (2007), "Gids Patiënteninformatie 2007"
  2. ^ ME/CVS Vereniging (2005), "Globaal Beleidsplan 2006-2008"
  3. ^ "ME is géén aanstellerij" (2005), Nederlands Dagblad, May 10
  4. ^ "ME-patiënten binden de strijd aan met vooroordelen" ME patients start battle against prejudice (2006) LVA (national disability association)
  5. ^ Arnoldus RJW (2007), "Diagnose als daad" (discussion), with a reply by Huibers M and Wessely S, Maandblad Geestelijke volksgezondheid, 7/8 580-583
  6. ^ Den Broeder G (2006), "Exploring Chronic Fatigue Syndrome in Adolescents" (discussion of Van de Putte E, 2006, Ph.D. thesis), Lees ME #1, 42-45
  7. ^ a b Arnoldus RJW (2006), "De beste stuurlui staan aan wal...", Lees ME #1, ME/CVS Vereniging, 9-14
  8. ^ a b 3B Platform, CG-Raad (Chronic ill and Handicapped Council)
  9. ^ a b "Lees ME", ME/CVS Vereniging, ISSN 1873-8931
  10. ^ De Graaf strategie- & beleidsadvies B.V. (2003), "Heden Wij. Quik-scan naar het functioneren van de ME-stichting Nederland"
  11. ^ Trade register, Chamber of Commerce
  12. ^ Gezondheidsraad (2007), "Verzekeringsgeneeskundige protocollen. Chronische-vermoeidheidssyndroom. Lumbosacraal radiculair syndroom", 2007/12
  13. ^ NICE CG53 National Institute for Health and Clinical Excellence (2007), "Guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)", London, ISBN 1846294533
  14. ^ Den Broeder G(2007), "Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom", Lees ME #2, ME/CVS Vereniging, 44-45
  15. ^ Den Broeder G (2007), "NICE Guideline", Lees ME #3, ME/CVS Vereniging, 32-35
  16. ^ ZonMw CFS programme
  17. ^ Schipper DM, Burgers JS (2007), "Rapport knelpuntenanalyse richtlijn chronisch vermoeidheidssyndroom" (Bottleneck analysis report, guideline CFS), Kwaliteitsinstituut voor de gezondheidszorg CBO
  18. ^ Kiesbeter.nl
  19. ^ Kamphuis HCM, Stukstette MJPM, Frijters JPM, Sonneveld RE, Kool RB (2007) "ME/CVS Vereniging. Uw organisatie gespiegeld", Verwey-Jonker Instituut / Prismant; see also the sector report
  20. ^ hetalternatief.org

[edit] External links

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