[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"article-175ed566-3e35-4865-b26a-1d493f7f9cb0--":3,"related-articles-undefined-undefined-343a8fd2-07cc-458c-8304-3e355355db01-true":23},{"id":4,"type":5,"title":6,"pubDate":7,"logoUrl":8,"anpFeedCategory":9,"organisationTitle":10,"thirdParty":11,"body":12,"note":13,"imageUrls":14,"city":19,"website":20,"orgId":21,"description":22},"175ed566-3e35-4865-b26a-1d493f7f9cb0","PRESSRELEASE","Tweede Kamer is aanzet: zorg voor ME-patiënten moet beter","2019-03-25T12:03:47.353+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>  \u003C\u002Fp>\n\u003Cp>Op woensdag 27 maart as. heeft de Tweede Kamer Commissie VWS de patiëntenorganisaties uitgenodigd voor een gesprek. Dit naar aanleiding van de brief van minister Bruins van 11 december over het Gezondheidsraad advies over ME. De minister zegt de vier aanbevelingen uit het advies te ondersteunen, maar maakt alleen budget vrij voor de eerste fase van het wetenschappelijk onderzoek. Hij constateert een gebrek aan kennis over ME in Nederland, maar volgens de Gezondheidsraad kan en moet de zorg voor de patiënten hier en nu beter! De patiëntenorganisaties roepen de Tweede Kamer op de minister te bewegen tot concrete toezeggingen over alle aanbevelingen van de Gezondheidsraad.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Tenminste drie ME-poliklinieken en betere scholing nodig \u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>De minister spreekt over één polikliniek, en zwijgt over budget. De Gezondheidsraad adviseerde tot het opstarten van tenminste drie ME-poliklinieken bij universitaire medische centra, goed verspreid door het land. ME-patiënten kunnen namelijk niet ver reizen, en blijven anders verstoken van hoogwaardige zorg. De patiëntenorganisaties vragen om toekenning van voldoende budget voor de realisatie van tenminste drie poliklinieken, met daarbij als voorwaarde invloed op de keuze en inrichting van deze klinieken. Bovendien dient de minister te regelen dat alle nodige zorg vergoed gaat worden uit de basisverzekering.\u003C\u002Fp>\n\u003Cp>De minister is het ook eens met de aanbeveling voor opleidingen van zorgverleners. De patiëntenorganisaties willen dat de minister hiervoor extra budget reserveert, en ook de toezegging betrokken te worden bij de inhoud van de opleidingen.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Intrekking behandelrichtlijn noodzakelijk \u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>Het advies van de Gezondheidsraad maakt herziening van de richtlijn CVS uit 2013 noodzakelijk. De aanbevolen behandelingen zijn in strijd met het advies en kunnen patiënten schaden. Deze aanbevelingen moeten onmiddellijk geschrapt worden. Daar is geen nieuwe kennis voor nodig. De patiëntenorganisaties roepen de politiek op om herziening met spoed in gang te zetten en hiervoor voldoende middelen vrij te maken.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Keuring bij arbeidsongeschiktheid kan veel beter\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>Namens minister Koolmees van SZW stelt de minister in zijn brief dat de uitgangspunten van het UWV in lijn zijn met het advies van de Gezondheidsraad. Uit recent onderzoek van de patiëntenorganisaties blijkt dat de verzekeringsartsen van het UWV in de praktijk hun conclusies vaak baseren op kennisgebrek en vooroordelen. Daardoor krijgen ME-patiënten lang niet altijd de uitkering waar ze recht op hebben. De patiëntenorganisaties vragen de toezegging dat dit snel verbetert, en verkeerde beoordelingen uit het verleden rechtgezet worden. Daarnaast vragen de patiëntenorganisaties om de toezegging betrokken te worden bij scholing van en instructie aan alle sociaal-medische beoordelaars. \u003C\u002Fp>\n\u003Cp>\u003Cstrong>Nog geen budget voor biomedisch onderzoek\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>ZonMw krijgt de opdracht om in samenspraak met patiëntenorganisaties een onderzoeksagenda te ontwikkelen als opstap naar een biomedisch onderzoeksprogramma. Volgens een schatting van ZonMw is daar 20 miljoen euro voor nodig. Wat ontbreekt, is de toezegging van de minister dat dit bedrag\u003C\u002Fp>\n\u003Cp>daadwerkelijk beschikbaar komt. Daarnaast ontbreekt de toezegging voor extra budget ter ondersteuning van de patiëntenorganisaties bij het ontwikkelen van de onderzoeksagenda. Volgens PGO Support is EUR 32.000 per jaar nodig voor het ondersteunen van de patiëntenvertegenwoordigers. Daarbij komt een bedrag voor advisering door buitenlandse experts.\u003C\u002Fp>\n\u003Cp>\u003Cstrong>De Tweede Kamer is aan zet: zorg beter voor ME!\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>De Gezondheidsraad is met een doordacht advies gekomen en de politiek zou de voorgestelde maatregelen meer handen en voeten moeten geven. De minister vindt kennisvermeerdering als sleutel voor betere zorg dringend nodig. De zorg voor ME-patiënten kan en moet nú al beter, stelt de Gezondheidsraad.  \u003C\u002Fp>\n\u003Cp>Tijdens het gesprek zal de publieke tribune gevuld zijn met patiënten, die zoveel mogelijk in de ME-kleur blauw gekleed zullen gaan. De hoop van de patiënten is gevestigd op de Tweede Kamer die nu aan zet is.\u003C\u002Fp>\n\u003Cp>De patiëntenorganisaties op het gebied van ME en CVS:\u003C\u002Fp>\n\u003Cp>ME\u002FCVS Stichting Nederland, https:\u002F\u002Fmecvs.nl\u003C\u002Fp>\n\u003Cp>ME\u002Fcvs Vereniging, www.me-cvsvereniging.nl\u003C\u002Fp>\n\u003Cp>Steungroep ME en Arbeidsongeschiktheid, www.steungroep.nl\u003C\u002Fp>\n\u003Cp> (ME (Myalgische Encefalomyelitis) wordt ook chronisch vermoeidheidssyndroom (CVS) genoemd. Veel ME-patiënten krijgen de diagnose CVS. De patiëntenorganisaties en internationaal vooraanstaande medici willen van de naam CVS af omdat deze leidt tot een verkeerd beeld en vooroordelen.)\u003C\u002Fp>\n\u003Cp>  \u003C\u002Fp>","Theo Kuiphof, tel. 06 - 41286513, e-mail: bestuur@mecvs.nl\r\n\t\tAugusta  Noorlander, tel. 06-18770112, e-mail: contact@me-cvsvereniging.nl\r\n\t\tYnske Jansen, 06 – 17488535, e-mail: y.jansen@steungroep.nl\r\n",[15,16,17,18],"https:\u002F\u002Flh3.googleusercontent.com\u002FuRsarA4XsiyXrfUUe_vDid7zRWyMMgIyuh6-gk6cN-ddSyJOh_wbXxr_iMwTOkBYZRSyugNlkFjA-xBfzRMI3qGDANu3sR3Z-O4","https:\u002F\u002Flh3.googleusercontent.com\u002F8B0udZbJIZD-oDX5StWztAiyBRA5Em6qXDdavt_eXhjZl0r3Xhac4xajSn0A-0gOhUr1qRt_ypJEWkM3kIRND6mFMgP2wAn8OQ","https:\u002F\u002Flh3.googleusercontent.com\u002FB-DLr7kTCvjNGQUyRgPbgCzua_xhKOEfqvcfkp74EbfbkMQfcndujto3piIc8kW9x4EMTh7cOT3Bg7G7lW39Xj5j2XM9UZIlECY","https:\u002F\u002Forder.perssupport.nl\u002Ffile\u002Fpressrelease\u002F343a8fd2-07cc-458c-8304-3e355355db01\u002F175ed566-3e35-4865-b26a-1d493f7f9cb0\u002FVerzoekAanTweedeKamerSamenwerkendePatintenorganisaties.pdf","Hilversum\u002FZuurdijk\u002FGroningen","https:\u002F\u002Fmecvs.nl\u002F","343a8fd2-07cc-458c-8304-3e355355db01","Op woensdag 27 maart as. heeft de Tweede Kamer Commissie VWS de patiëntenorganisaties uitgenodigd voor een gesprek. Dit naar aanleiding van de brief van ministe",[24,39,706,714,1086,1089,1229,1231,1236,1244],{"id":25,"title":26,"pubDate":27,"logoUrl":8,"thirdParty":11,"imageUrls":28,"orgId":21,"branches":34,"description":38},"3a1d396a-f3ee-4867-b2e8-d3c524d62efd","The Social Challenge November 2021: Extra kansen voor jongeren met ME\u002FCVS","2021-10-22T13:26:32.229+02:00",[29,30,31,32,33],"https:\u002F\u002Flh3.googleusercontent.com\u002FeKoZngF503YMjTxXXtzw2mamQFKiNSVwiQPY6PtRw_LD8r-m564d3m7KZrYUmP6UjBRbJoTp5giF7DM18OsD05AEWxz8HaFXJQ","https:\u002F\u002Flh3.googleusercontent.com\u002FDtuI32vtUCSSA5iqtbcL_IGW2_te3lzzJd5JndiDPdHze1TGn98BNkQe5jvpJXGv3TydnOjRuzB9mHmo7voZDpi_Cuv-FQWGsus","https:\u002F\u002Flh3.googleusercontent.com\u002FhC3K3PD7ZP0rZAv_gdPWGjUjKBUl6xcOgA4r0__FntcYsOb4HMwG5AYnPk9nJQZERx04HtJvZePadJxBUrDvUKGsETFThYNjY1o","https:\u002F\u002Flh3.googleusercontent.com\u002Fh96c5egSbLejxWflLZr07TqUTrOmM7C-hvaisAcxux-xAY8JGq7ZV4BEkGLDAu44fW4prYQsnoT1kGLHuYE5eZwbRdwgE1kvfA","https:\u002F\u002Flh3.googleusercontent.com\u002F7oSeLDRwHEJK4psnPZtYy9zPNM3IYPBqIxUVOrtyqrOs36RPBs5W3Flikl7ZV-VGJzlfDaaaMoZ7S4ktaF7y1j27uWPn7ajYeg",[35],{"id":36,"title":37},"19100","Onderwijs","Extra kansen voor jongeren met ME\u002FCVS Je bent jong en hebt een slopende, chronische ziekte. Dan kun je vaak minder makkelijk meekomen in de maatschappij. Met vr",{"id":40,"title":41,"pubDate":42,"logoUrl":8,"thirdParty":11,"imageUrls":43,"orgId":21,"branches":49,"description":705},"e17b4e9e-5af2-42e1-a3cf-e2272d0342ec","MDT biedt nieuwe kansen voor jongeren met chronische 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