[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"article-430a21b1-008e-4b88-be99-5a13ebfc97d7--":3,"related-articles-undefined-undefined-343a8fd2-07cc-458c-8304-3e355355db01-true":21},{"id":4,"type":5,"title":6,"pubDate":7,"logoUrl":8,"anpFeedCategory":9,"organisationTitle":10,"thirdParty":11,"body":12,"imageUrls":13,"city":17,"website":18,"orgId":19,"description":20},"430a21b1-008e-4b88-be99-5a13ebfc97d7","PRESSRELEASE","\"Nu maatregelen nodig voor ME-Patiënten\"","2018-03-16T12:58:41.197+01:00","https:\u002F\u002Fwww.persberichten.nl\u002Ffile\u002Flogos\u002F343a8fd2-07cc-458c-8304-3e355355db01\u002F5c83ce98-e4c3-4906-bf62-800a1d460782.jpg","Binnenland","ME\u002FCVS-Stichting Nederland",false,"\u003Cp>Reactie gezamenlijke patiëntenorganisaties op advies Gezondheidsraad\u003Cstrong>&nbsp;\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>\u003Cstrong>D\u003C\u002Fstrong>\u003Cstrong>e organisaties van ME- en CVS-patiënten\u003C\u002Fstrong>\u003Cstrong> ondersteunen de aanbevelingen van de Gezondheidsraad over ME (1). \u003C\u002Fstrong>\u003Cstrong>Verbetering van de situatie van ME-patiënten is urgent. Daarvoor zijn concrete maatregelen nodig.\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>De Gezondheidsraad concludeert vandaag dat ME een ernstige chronische ziekte is, die het functioneren en de kwaliteit van leven substantieel beperkt. De zorg voor ME moet beter en Nederland heeft een inhaalslag te maken op het gebied van wetenschappelijk onderzoek, aldus het advies. In Nederland leven naar schatting 30.000 tot 40.000 ME-patiënten. De patiëntenorganisaties dringen aan op een voortvarende uitvoering van onderstaande maatregelen.\u003Cstrong> \u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Richtlijn herzien\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>De Gezondheidsraad spreekt zich niet uit over de richtlijn CVS uit 2013. De patiëntenorganisaties concluderen dat deze is achterhaald en dat herziening dringend geboden is. De richtlijn beveelt gedrags- en bewegingstherapie als (enige) voorkeursbehandelingen aan. Dit moet onmiddellijk ingetrokken worden.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Behandeling en zorg, expertisecentra\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>De zorg voor ME-patiënten kan en moet hier en nu beter\u003Cstrong>, \u003C\u002Fstrong>zo stelt het advies. Volgens de patiëntenorganisaties is scholing van zorgverleners, gebaseerd op de actuele stand van de wetenschap én de kennis van patiënten, hiervoor een vereiste. ME-patiënten moeten voor behandeling terecht kunnen in gespecialiseerde centra verspreid over het land. De overheid dient hiervoor ruim voldoende middelen vrij te maken.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Stimulering biomedisch onderzoek\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>ME wordt veroorzaakt door biomedische processen. Wetenschappelijk onderzoek hiernaar is dringend geboden. Volgens ZonMw is hiervoor ten minste 2 miljoen euro per jaar nodig gedurende een tienjarig programma. De patiëntenorganisaties vragen de minister dit bedrag beschikbaar te stellen.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Sociaal-medische beoordeling\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>Veel ME-patiënten zijn door hun ziekte aangewezen op een uitkering of op voorzieningen en aanpassingen op het gebied van werk, onderwijs, mobiliteit of wonen. Bij sociaal-medische beoordelingen wordt nu te vaak onvoldoende rekening gehouden met de invaliderende gevolgen van de ziekte. Dit moet rechtgezet worden.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Tijd voor actie\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>ME is een ernstige ziekte. In de ‘lichtere’ gevallen kunnen patiënten niet volledig meer meedoen op school of werk en in het sociaal leven. Zij zijn gedeeltelijk afhankelijk van verzorging door anderen. In de zwaarste gevallen zijn zij volledig bedlegerig, afgeschermd van licht en geluid, bijna zonder sociaal contact, soms zelfs aangewezen op kunstmatige voeding.\u003Cstrong> \u003C\u002Fstrong>De patiëntenorganisaties doen een krachtig beroep op de minister, artsen en alle andere verantwoordelijken om nu voor de ME-patiënten in actie te komen.\u003C\u002Fp>\n\u003Cp>De patiëntenorganisaties op het gebied van ME en CVS:\u003C\u002Fp>\n\u003Cp>ME\u002FCVS Stichting Nederland, Theo Kuiphof, voorzitter\u003C\u002Fp>\n\u003Cp>ME\u002Fcvs Vereniging, Yvonne van der Ploeg\u003C\u002Fp>\n\u003Cp>Steungroep ME en Arbeidsongeschiktheid, Catrinus Egas, voorzitter\u003C\u002Fp>\n\u003Cp>[1] ME (Myalgische Encefalomyelitis) wordt ook chronisch vermoeidheidssyndroom (CVS) genoemd. Veel ME-patiënten krijgen de diagnose CVS. 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