[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"article-59771267-51ca-402e-814c-141dedb5f9eb--":3,"related-articles-undefined-undefined-343a8fd2-07cc-458c-8304-3e355355db01-true":17},{"id":4,"type":5,"title":6,"pubDate":7,"logoUrl":8,"anpFeedCategory":9,"organisationTitle":10,"thirdParty":11,"body":12,"city":13,"website":14,"orgId":15,"description":16},"59771267-51ca-402e-814c-141dedb5f9eb","PRESSRELEASE","Minister erkent ME advies, toezeggingen voor patiënten ontbreken","2018-12-13T10:00:00.078+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>\u003Cem>Reactie ME\u003Cstrong>[1]\u003C\u002Fstrong> patiëntenorganisaties op de beleidsbrief van minister Bruins\u003C\u002Fem>\u003C\u002Fp>\n\u003Cp>Op 11 december verscheen de reactie van minister Bruins op het advies van de Gezondheidsraad over ME. De minister zegt de aanbevelingen uit het advies te ondersteunen, maar doet weinig concrete  toezeggingen. De patiëntenorganisaties vinden dat de minister onvoldoende regie neemt. 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!\u003C\u002Fp>\n\u003Cp>\u003Cstrong>ME poliklinieken en betere scholing nodig \u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>De Gezondheidsraad adviseerde tot het opstarten van een aantal ME-poliklinieken bij universitaire medische centra. De minister zegt dit te steunen, maar spreekt slechts over één polikliniek. Hij is het ook eens met de aanbeveling voor opleidingen van zorgverleners. Wat echter ontbreekt is een regierol van de minister bij de implementatie, net als het nodige extra budget daarvoor. De patiëntenorganisaties willen betrokken worden bij de keuze waar de poliklinieken gevestigd worden en hoe de zorg daar wordt ingericht, evenals bij de inhoud van de opleidingen.\u003Cstrong> \u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>\u003Cstrong>Keuring bij arbeidsongeschiktheid moet 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. Dit moet snel verbeteren en verkeerde beoordelingen uit het verleden moeten rechtgezet worden. De patiëntenorganisaties doen een klemmend beroep op de Tweede Kamer om daar bij de ministers op aan te dringen. \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. Omdat artsenorganisaties het niet doen moet de overheid hierin verantwoordelijkheid nemen. 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>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 ZonMw is daar 20 miljoen euro voor nodig. Wat ontbreekt is de toezegging van de minister dat dit bedrag daadwerkelijk beschikbaar komt.  \u003C\u002Fp>\n\u003Cp>\u003Cstrong>Hoop gevestigd op de Tweede Kamer\u003C\u002Fstrong>\u003C\u002Fp>\n\u003Cp>[1] 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>\n\u003Cp>ME is een ernstige chronische ziekte, die het functioneren en de kwaliteit van leven substantieel beperkt, aldus de Gezondheidsraad. In Nederland lijden 30.000 – 40.000 mensen aan deze ziekte. 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. 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>\u003Cem>ME\u002FCVS Stichting Nederland, https:\u002F\u002Fmecvs.nl\u003C\u002Fem>\u003C\u002Fp>\n\u003Cp>\u003Cem>ME\u002Fcvs Vereniging, www.me-cvsvereniging.nl\u003C\u002Fem>\u003C\u002Fp>\n\u003Cp>\u003Cem>Steungroep ME en Arbeidsongeschiktheid, www.steungroep.nl\u003C\u002Fem>\u003C\u002Fp>\n\u003Cp>  \u003C\u002Fp>","Hilversum\u002FZuurdijk\u002FGroningen","https:\u002F\u002Fmecvs.nl\u002F","343a8fd2-07cc-458c-8304-3e355355db01","Reactie ME[1] patiëntenorganisaties op de beleidsbrief van minister Bruins Op 11 december verscheen de reactie van minister Bruins op het advies van de Gezondhe",[18,33,700,708,1080,1083,1223,1233,1234,1242],{"id":19,"title":20,"pubDate":21,"logoUrl":8,"thirdParty":11,"imageUrls":22,"orgId":15,"branches":28,"description":32},"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",[23,24,25,26,27],"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",[29],{"id":30,"title":31},"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. 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