{"id":28247,"date":"2022-02-24T10:44:24","date_gmt":"2022-02-24T10:44:24","guid":{"rendered":"https:\/\/confesq.org\/?p=28247"},"modified":"2022-02-24T13:25:51","modified_gmt":"2022-02-24T13:25:51","slug":"europarlamentarios-espanoles-participan-en-nuevas-acciones-para-el-cumplimento-de-la-resolucion-2580-2020","status":"publish","type":"post","link":"https:\/\/confesq.org\/?p=28247","title":{"rendered":"Europarlamentarios espa\u00f1oles participan en nuevas acciones para el cumplimento de la Resoluci\u00f3n 2020\/2580(RSP)\/ SPANISH MEPS PARTICIPATING IN NEW ACTIONS TO COMPLY WITH 2020\/2580(RSP) RESOLUTION"},"content":{"rendered":"

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Europarlamentarios espa\u00f1oles participan en nuevas acciones para el cumplimento de la Resoluci\u00f3n (2020\/2580(RSP))<\/u><\/strong><\/h3>\n
[Versi\u00f3n en espa\u00f1ol]<\/div>\n

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El Europarlamentario belga, Pascal Arimont, exhorta la necesidad de que las recomendaciones de la Resoluci\u00f3n del Parlamento Europeo, de 18 de junio de 2020, sobre la financiaci\u00f3n adicional para la investigaci\u00f3n biom\u00e9dica de la encefalomielitis mi\u00e1lgica (2020\/2580(RSP))<\/span><\/a> se conviertan finalmente en acciones significativas.<\/p>\n<\/div>\n

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Para ello, Arimont ha redactado dos cartas junto con los europarlamentarios: Radan Kanev (Bulgaria) Ulrike M\u00fcller (Alemania), Alex Agius Saliba (Malta), Cindy Franssen (B\u00e9lgica), Sirpa Pietik\u00e4inen (Finlandia), Frances Fitzgerald (Irlanda), G\u00fcnther Sidl (Austria), Jordi Ca\u00f1as, Dolors Montserrat y Cristina Maestre, <\/strong>dirigidas a Sandra Gallina, Directora General de Salud y Seguridad Alimentaria y a Stella Kyriakides, Comisaria de Salud y Seguridad Alimentaria. Jordi Ca\u00f1as, Dolors Montserrat y Cristina Maestre adem\u00e1s apoyan la campa\u00f1a auton\u00f3mica pro EM\/sfc que estamos desarrollando.<\/strong><\/a><\/span><\/div>\n

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El objetivo principal de estas cartas es el de incluir la Encefalomielitis Mi\u00e1lgica\/S\u00edndrome de Fatiga Cr\u00f3nica en la Red Europea de Referencia (RER) de enfermedades neurol\u00f3gicas.<\/p>\n<\/div>\n

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Se dirig\u00eda as\u00ed a la Directora General de Salud y Seguridad Alimentaria:<\/p>\n<\/div>\n

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Dado que el EM\/SFC est\u00e1 muy poco investigado, los pacientes se beneficiar\u00edan enormemente de una red que permitir\u00eda a los escasos m\u00e9dicos especializados en esta enfermedad compartir conocimientos y experiencias. [\u2026] El intercambio de experiencias podr\u00eda mejorar, al menos parcialmente, la calidad de vida de los pacientes. Adem\u00e1s, como se sabe que el EM\/SFC puede ser desencadenado por una infecci\u00f3n viral, los cient\u00edficos est\u00e1n convencidos que la pandemia de COVID-19 impulsar\u00e1 la importancia del intercambio de conocimientos en este campo.<\/em> [\u2026] Su Direcci\u00f3n General y los empleados de la Comisi\u00f3n deber\u00edan tomarse en serio esta petici\u00f3n de los ciudadanos, y que los pacientes afectados tienen derecho a informaci\u00f3n y aclaraciones, nos gustar\u00eda pedirle que nos d\u00e9 una respuesta a estas preguntas tan relevantes.<\/em><\/div>\n

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A la Comisaria de Salud y Seguridad Alimentaria, Stella Kyriakides se dirig\u00eda para remarcar la falta de resultados tras la resoluci\u00f3n del Parlamento Europeo del 18 de junio de 2020 sobre la financiaci\u00f3n de la biom\u00e9dica sobre la encefalomielitis mi\u00e1lgica:<\/p>\n<\/div>\n

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Casi dos a\u00f1os despu\u00e9s de la adopci\u00f3n de la resoluci\u00f3n 2020\/2580(RSP), tenemos que constatar que la Comisi\u00f3n de la UE no ha producido resultados tangibles en el esp\u00edritu de la resoluci\u00f3n: Hasta ahora, no ha habido ni un solo estudio biom\u00e9dico sobre el EM\/SFC con financiaci\u00f3n europea.<\/em> [\u2026] Ante una crisis de salud p\u00fablica con 2 millones de pacientes en la UE antes de la pandemia -y cada mes decenas de miles adicionales debido al Covid persistente – \u00a1esto es simplemente inaceptable!<\/em> [\u2026] Necesitamos urgentemente una red europea para la investigaci\u00f3n biom\u00e9dica del EM\/SFC que pueda, por ejemplo, aprovechar las experiencias y los conocimientos de la red EUROMENE existente y conducir a la creaci\u00f3n de un Centro Europeo de Excelencia para el EM\/SFC que encabece el establecimiento de centros regionales en los Estados miembros. [\u2026] Si queremos abordar realmente la enfermedad, tambi\u00e9n necesitamos apoyo europeo para la financiaci\u00f3n de la investigaci\u00f3n sobre biomarcadores, centros de investigaci\u00f3n cl\u00ednica y ensayos cl\u00ednicos en cooperaci\u00f3n con la industria farmac\u00e9utica.<\/em><\/div>\n

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Adem\u00e1s, Cristina Maestre tambi\u00e9n lo mencionaba en su Twitter:<\/div>\n

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Esperamos que estas acciones, junto con las llevadas a cabo por CONFESQ y las asociaciones locales en la Campa\u00f1a Auton\u00f3mica pro EM\/sfc se traduzcan pronto en acciones concretas.<\/p>\n<\/div>\n

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Spanish MEPs participating in new actions to comply with\u00a0 (2020\/2580(RSP)) <\/span><\/span>Resolution<\/span><\/span><\/h3>\n
[English version]<\/div>\n

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Belgian MEP Pascal Arimont urges the need for the recommendations of the European Parliament’s resolution of 18 June 2020 on additional funding for biomedical research into myalgic encephalomyelitis (2020\/2580(RSP)) to be finally translated into meaningful action.<\/div>\n

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For this, Arimont has drafted two letters together with MEPs: Radan Kanev (Bulgaria) Ulrike M\u00fcller (Germany), Alex Agius Saliba (Malta), Cindy Franssen (Belgium), Sirpa Pietik\u00e4inen (Finland), Frances Fitzgerald (Ireland), G\u00fcnther Sidl (Austria), Jordi Ca\u00f1as, Dolors Montserrat and Cristina Maestre<\/strong>, addressed to Sandra Gallina, Director General for Health and Food Safety and Stella Kyriakides, Commissioner for Health and Food Safety. Jordi Ca\u00f1as, Dolors Montserrat and Cristina Maestre also support the regional campaign we are developing.<\/div>\n

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The main objective of these letters is to include Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome in the European Reference Network (ERN) for neurological diseases.<\/p>\n<\/div>\n

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Since ME\/CFS is seriously under-researched, patients would greatly benefit from a network that would allow the scarce physicians specialized in this disease to share knowledge and experiences. [\u2026] Exchanging experiences could at least partially improve the quality of life of patients. Furthermore, as it is known that ME\/CFS can be triggered by a viral infection, scientists are convinced that the COVID-19 pandemic will boost the importance of knowledge exchange in this field. [\u2026]Since we assume that your Directorate-General and the Commission’s employees should take such a citizen\u2019s request seriously, and that the patients concerned have a right to information and clarification, we would like to ask you to give us an answer to these very relevant questions.<\/em><\/p>\n<\/div>\n

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The Commissioner for Health and Food Safety, Stella Kyriakides, was also addressed to highlight the lack of results following the European Parliament’s resolution of 18 June 2020 on biomedical funding for Myalgic encephalomyelitis:<\/p>\n<\/div>\n

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Almost two years after the adoption of resolution 2020\/2580(RSP), we have to note that the EU Commission did not produce tangible results in the spirit of the resolution: So far, there has not been a single biomedical study on ME\/CFS with European funding. [\u2026] In the face of a public health crisis with 2 million patients in the EU before the pandemic \u2013 and each month tens of thousands additional ones due to Long Covid \u2013 this is simply not acceptable!<\/em> [\u2026] We however urgently need a European network for biomedical ME\/CFS research that could, for example, build on the experiences and knowledge of the existing EUROMENE network and lead to the creation of a European Centre of Excellence for ME\/CFS to spearhead the establishment of regional centres in Member States \u00a0[\u2026] If we want to really tackle the disease, we also need European support for research funding on biomarkers, clinical research centres, and clinical trials in cooperation with the pharmaceutical industry.<\/em><\/div>\n

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In addition, Spanish MEP Cristina Maestre mentioned it in her twitter:<\/p>\n<\/div>\n

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We hope that these actions, together with those carried out by CONFESQ and local associations in the Autonomous ME\/CFS Campaign, will soon be translated into concrete actions.<\/div>\n

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