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Op 17 juni stemt het Europees Parlement (EP) over een resolutie voor meer wetenschappelijk onderzoek naar ME\u002FCVS.\u003C\u002Fp>\n\u003Cp>Omdat er geen genezende behandeling is voor ME\u002FCVS en over de onderliggende pathologie weinig bekend is, diende de Nederlandse Evelien van den Brink een petitie in bij het Europees Parlement. In de petitie vraagt ze om meer wetenschappelijk onderzoek naar de aandoening.\u003C\u002Fp>\n\u003Cp>“ME\u002FCVS is een invaliderende, chronische ziekte die extreme uitputting, concentratie- en geheugenstoornissen, niet-verfrissende slaap en velerlei andere symptomen veroorzaakt. Het typerendste kenmerk is een verergering van symptomen na inspanning. Meer wetenschap is de enige weg vooruit,” ligt Evelien toe, die al tweeëntwintig jaar aan ME\u002FCVS lijdt.\u003C\u002Fp>\n\u003Cp>De petitie werd veertienduizend keer ondertekend door ME\u002FCVS-patiënten en hun naasten uit heel Europa en resulteerde in de allereerste resolutie over ME\u002FCVS in het Europees Parlement. Volgens EMEC, een samenwerking van Europese ME\u002FCVS-onderzoekers wordt er in de VS, Australië en Canada aanzienlijk meer geïnvesteerd in onderzoek naar ME\u002FCVS. Europa loopt hierin achter. Meer dan honderd ME\u002FCVS-onderzoekers uit de hele wereld steunen de petitie en pleiten in een open brief voor meer Europees onderzoek naar ME\u002FCVS. “Deze patiënten zijn veel te lang genegeerd,” zegt Pascal Arimont, een van de Europese parlementsleden die de resolutie ondersteunt.\u003C\u002Fp>\n\u003Cp>Intussen gebeurt er ook het nodige in Nederland. In een advies van de Gezondheidsraad uit 2018 werd ME\u002FCVS erkend als multisysteemziekte, en werd een substantieel en langjarig onderzoeksprogramma aanbevolen. Hierop heeft de minister opdracht gegeven een ME\u002FCVS-onderzoeksagenda te ontwikkelen, gericht op biomedisch onderzoek. Inmiddels heeft dit geleid tot de installatie van een stuurgroep met zowel overheid-, wetenschappers- als patiëntvertegenwoordigers, waaronder de ME\u002FCVS Stichting Nederland. De ambitie is om begin 2022 met het wetenschappelijke onderzoek in Nederland te beginnen.\u003C\u002Fp>\n\u003Cp>Meer weten? 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Nederland lijden vermoedelijk 20.000 jongeren aan ME\u002FCVS (Chronisch Vermoeidheids Syndroom), een multi-systeem ziekte. Maar het merendeel weet dat niet. En l",{"id":1467,"title":1468,"pubDate":1469,"logoUrl":8,"thirdParty":10,"imageUrls":1470,"orgId":15,"description":1475},"175ed566-3e35-4865-b26a-1d493f7f9cb0","Tweede Kamer is aanzet: zorg voor ME-patiënten moet beter","2019-03-25T12:03:47.353+01:00",[1471,1472,1473,1474],"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","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",{"id":1477,"title":1478,"pubDate":1479,"logoUrl":8,"thirdParty":10,"orgId":15,"description":1480},"59771267-51ca-402e-814c-141dedb5f9eb","Minister erkent ME advies, toezeggingen voor patiënten ontbreken","2018-12-13T10:00:00.078+01:00","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",{"id":1482,"title":1483,"pubDate":1484,"logoUrl":8,"thirdParty":10,"imageUrls":1485,"orgId":15,"description":1488},"eec26a9d-ba8f-4ce8-9534-d01898c54885","12 mei Wereld ME-dag, oproep: zorg beter voor ME","2018-05-09T13:00:00.236+02:00",[1486,1487],"https:\u002F\u002Flh3.googleusercontent.com\u002F8lWfrpfSzzZChTNPTadZA8iIaPsohqF9J0iiYj8dF29JQQ44CMbyd8jOxUKpsBLTsXZ3C5bw30hEXc-sZsM9thUsELpVCYE6ZA","https:\u002F\u002Flh3.googleusercontent.com\u002FGThO1Zxa2UdoDuXpAsnRjXVgEyN3dGjhbw_8BZXzI77UyVfkLBzU0pOgUjaCcyf9-ItA5mYOtPbQqRUs94IizW239lb0bMY-","Op 12 mei is het Wereld ME-dag. Over de hele wereld wordt dan aandacht besteed aan de ernstige chronisch ziekte ME. Van Australië tot Finland vinden manifestati",{"id":1490,"title":1491,"pubDate":1492,"logoUrl":1493,"thirdParty":10,"imageUrls":1494,"orgId":15,"description":1498},"b4d71d4e-8221-496d-91e4-af962f4549f6","Actie voor gelijke behandeling, op 12 mei as. 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