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ME/CVS Vereniging: Difference between revisions
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The '''ME/CVS Vereniging''' (''ME/CFS Association'') | The '''ME/CVS Vereniging''' (''ME/CFS Association'') was the patient association for [[myalgic encephalomyelitis]] / [[chronic fatigue syndrome]] in the [[Netherlands]] during 2005-2011.<ref>[http://www.npcf.nl/ NPCF] (2008), "Gids Patiënteninformatie 2008" (''Patient information guide'')</ref> | ||
==Goals== | ==Goals== | ||
The association | 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.<ref>ME/CVS Vereniging, "Globaal Beleidsplan 2006-2008", 2005 (''policy plan'')</ref> The association also aimed to combat [[prejudice]] and [[discrimination]]<ref>"ME is géén aanstellerij", Nederlands Dagblad, May 10, 2005</ref><ref>[http://www.lva-nederland.nl/basis1/nieuwsfolder/pdf/nwsbr35.pdf "ME-patiënten binden de strijd aan met vooroordelen"], LVA, 2006 ((''ME patients start battle against prejudice; national disability association'')</ref><ref>Arnoldus RJW, "Diagnose als daad" (discussion), with a reply by Huibers M and [[Simon Wessely|Wessely S]], Maandblad Geestelijke volksgezondheid, 2007, 7/8 580-583</ref> and to foster patient contact. In addition, the association stimulated, reviewed<ref>Den Broeder G, "Testen op ME/CVS", Lees ME #5, 2008, 37-41 (''testing for ME/CFS'')</ref> and supervised<ref name="Arnoldus06">Arnoldus RJW, "De beste stuurlui staan aan wal...", Lees ME #1, 2006, 9-14</ref> scientific research, and together with other patient organizations represented patients in the development of protocols and guidelines.<ref name="platform">[http://www.cg-raad.nl/aib/protocollenenrichtlijnen.html 3B Platform], CG-Raad (''Chronic ill and Handicapped Council'')</ref> The ME/CVS Vereniging published the magazine '''Lees ME'''<ref name="LeesME">[http://www.me-cvsvereniging.nl/me-cvs-nieuws/pdf/200710%20Lees%20ME%20webversie.pdf "Lees ME"], ME/CVS Vereniging, ISSN 1873-8931 (''Read ME'')</ref> (''Read ME''), as well as leaflets, brochures, an [[electronic newsletter]], etc. | ||
==History== | ==History== | ||
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A research project supervised by the ME/CVS Vereniging suggested poor knowledge of ME/CFS among physicians.<ref name="Arnoldus06"/> | A research project supervised by the ME/CVS Vereniging suggested poor knowledge of ME/CFS among physicians.<ref name="Arnoldus06"/> | ||
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.<ref name="platform"/> The first Dutch insurance protocol for CFS, published in 2007<ref>[http://www.gr.nl/pdf.php?ID=1532&p=1 Gezondheidsraad], "Verzekeringsgeneeskundige protocollen. Chronische-vermoeidheidssyndroom. Lumbosacraal radiculair syndroom", 2007, #12</ref>, was severely criticized by the ME/CVS Vereniging, as was the [[NICE]] Guideline for [[England]] and [[Wales]]<ref>[http://guidance.nice.org.uk/CG53 NICE CG53] National Institute for Health and Clinical Excellence, "Guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)", London, 2007, ISBN 1846294533</ref>, alleging that both are misrepresenting the disorder and putting undue emphasis on behavioral therapies.<ref>Den Broeder G, "Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom", Lees ME #2, ME/CVS Vereniging, 2007, 44-45</ref><ref>Den Broeder G, "NICE Guideline", Lees ME #3, ME/CVS Vereniging, 2007, 32-35</ref> The ME/CVS Vereniging | 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.<ref name="platform"/> The first Dutch insurance protocol for CFS, published in 2007<ref>[http://www.gr.nl/pdf.php?ID=1532&p=1 Gezondheidsraad], "Verzekeringsgeneeskundige protocollen. Chronische-vermoeidheidssyndroom. Lumbosacraal radiculair syndroom", 2007, #12</ref>, was severely criticized by the ME/CVS Vereniging, as was the [[NICE]] Guideline for [[England]] and [[Wales]]<ref>[http://guidance.nice.org.uk/CG53 NICE CG53] National Institute for Health and Clinical Excellence, "Guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)", London, 2007, ISBN 1846294533</ref>, alleging that both are misrepresenting the disorder and putting undue emphasis on behavioral therapies.<ref>Den Broeder G, "Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom", Lees ME #2, ME/CVS Vereniging, 2007, 44-45</ref><ref>Den Broeder G, "NICE Guideline", Lees ME #3, ME/CVS Vereniging, 2007, 32-35</ref> 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.<ref>[http://www.zonmw.nl/nl/programma-s/alle-programma-s/cvs/ ZonMw CFS programme]</ref><ref>Schipper DM, Burgers JS (2007), "Rapport knelpuntenanalyse richtlijn chronisch vermoeidheidssyndroom", Kwaliteitsinstituut voor de gezondheidszorg [http://www.cbo.nl/home_html CBO] (''Bottleneck analysis report, guideline CFS'')</ref> | ||
The ME/CVS Vereniging | The ME/CVS Vereniging was mentioned on most internet pages that deal with ME/CFS and/or patient organizations.<ref>[http://www.kiesbeter.nl/patientenrechten/Detail/?organisatieId=4465 Kiesbeter.nl]</ref> It ran the largest ME/CFS patient hyve on the Dutch [[Hyves]].<ref>[http://www.me-cvsvereniging.nl/me-cvs-nieuws/archives/archive_2008-m07.php#e302 300th member for Hyve ME/CVS Vereniging], July 2008</ref> | ||
==Finance== | ==Finance== | ||
Financially, the association | Financially, the association depended on membership fees, donations, gifts and project subsidies.<ref>Kamphuis HCM, Stukstette MJPM, Frijters JPM, Sonneveld RE, Kool RB, "ME/CVS Vereniging. Uw organisatie gespiegeld", [http://www.verwey-jonker.nl/ Verwey-Jonker Instituut] / [http://www.prismant.nl/ Prismant], 2007; see also the [http://www.fondspgo.nl/documenten/monitor%20brancherapport%202006.doc sector report]</ref> | ||
The standard contribution per member | The standard contribution per member was 25 Euro annually. | ||
==Lees ME== | ==Lees ME== | ||
'''Lees ME''' | '''Lees ME''' was the journal of the ME/CVS Vereniging.<ref name="LeesME"/> 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== | ==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 [[ | 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== | ==Books by members== | ||
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==External links== | ==External links== | ||
* [http://www. | * [http://www.mevereniging.nl/ ME Vereniging Nederland] | ||
* [http:// | * [http://www.mevereniging.nl/me-cvsvereniging ME/CVS Vereniging] (archive) | ||
{{refs}} | {{refs}} | ||
[[Category: | [[Category:Myalgic encephalomyelitis]] | ||
[[Category:Organizations in the Netherlands]] | [[Category:Organizations in the Netherlands]] | ||
[[Category:Patient organizations]] | [[Category:Patient organizations]] | ||
[[nl:ME/CVS Vereniging]] | [[nl:ME/CVS Vereniging]] | ||
Latest revision as of 21:32, 2 October 2014
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
- ME Vereniging Nederland
- ME/CVS Vereniging (archive)
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