{"id":29775,"date":"2024-07-01T08:22:23","date_gmt":"2024-07-01T08:22:23","guid":{"rendered":"https:\/\/confesq.org\/?p=29775"},"modified":"2024-07-01T11:02:49","modified_gmt":"2024-07-01T11:02:49","slug":"entrevista-al-dr-chris-amstrong-copy-copy-2-copy-copy-copy-2-copy-copy-copy-copy-copy-copy-copy-copy-copy-copy-copy-2-copy-copy-copy-2-copy-copy","status":"publish","type":"post","link":"https:\/\/confesq.org\/?p=29775","title":{"rendered":"Mensaje de la OMS Europa para los Delegados de la Semana Internacional de la Conferencia sobre EM"},"content":{"rendered":"

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Mensaje de la OMS Europa para los Delegados de la Semana Internacional de la Conferencia sobre EM<\/span><\/span>\u00a0<\/span>\u00a0<\/strong><\/p>\n<\/div>\n

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ESPA\u00d1OL: <\/strong><\/span><\/p>\n

En 2023<\/strong>, la Alianza Europea de EM<\/strong> recibi\u00f3 el estatus de \u00abAcreditaci\u00f3n oficial de Actor No Estatal\u00bb<\/strong><\/a> de la Oficina Regional para Europa de la OMS<\/strong> durante la 73\u00aa Reuni\u00f3n del Comit\u00e9 Regional de la OMS Europa (RC73).<\/span>\u00a0<\/span><\/p>\n

Este estatus permite a EMEA participar en las Reuniones Regionales de la OMS Europa<\/strong> y hacer declaraciones oficiales<\/strong> sobre temas de inter\u00e9s en la agenda.<\/span>\u00a0<\/span><\/p>\n

De esta manera, EMEA tiene como objetivo aumentar la conciencia, el reconocimiento y la acci\u00f3n sobre la EM\/SFC<\/strong> por parte de los 53 pa\u00edses miembros de la OMS Europa.<\/span>\u00a0<\/span><\/p>\n

EMEA se compromete a asociarse con la OMS Europa<\/strong> y trabajar juntos para apoyar a las personas con EM<\/strong> y a sus cuidadores en Europa, y avanzar r\u00e1pidamente para mejorar la investigaci\u00f3n y el tratamiento de la EM<\/strong> en todo nuestro continente.<\/span>\u00a0<\/span><\/p>\n

La Alianza Europea de EM (EMEA) apoya la Semana Anual de la Conferencia Internacional sobre Investigaci\u00f3n en EM<\/strong> organizada por su miembro del Reino Unido ‘Invest in ME Research’.<\/span>\u00a0<\/span><\/p>\n

Estamos extremadamente agradecidos de que la Conferencia se inaugure con un mensaje en video de la OMS Europa, ayudando a crear conciencia sobre las necesidades a\u00fan no satisfechas de los pacientes con EM\/SFC, a pesar de haber sido reconocida como una enfermedad neurol\u00f3gica hace m\u00e1s de 50 a\u00f1os por la OMS.<\/span>\u00a0<\/span><\/p>\n

Agradecemos a la OMS Europa por ser socios en el apoyo a la Semana Internacional de la Conferencia sobre EM al proporcionar este video del Dr. Cathal Morgan<\/strong>, de la Oficina Regional de la OMS para Europa, para los delegados del taller de investigadores j\u00f3venes EMERG<\/strong> de carrera temprana, el 13\u00ba Coloquio de Investigaci\u00f3n Biom\u00e9dica en EM #BRMEC13<\/strong>, y la 16\u00aa Conferencia Internacional sobre EM #IIMEC16<\/strong> y para los participantes en el taller del Grupo Europeo de Investigaci\u00f3n en EM-NIH<\/strong> que se llevar\u00e1 a cabo durante la semana.<\/span>\u00a0<\/span><\/p>\n

En ausencia de reconocimiento oficial y financiaci\u00f3n de la EM\/SFC en toda Europa, ha quedado en manos de EMEA y sus organizaciones miembros iniciar y financiar la investigaci\u00f3n en Europa y organizar esta Conferencia, que re\u00fane a investigadores, cl\u00ednicos y organizaciones de pacientes de renombre mundial para facilitar la colaboraci\u00f3n internacional en la investigaci\u00f3n biom\u00e9dica sobre la EM\/SFC.<\/span>\u00a0<\/span><\/p>\n

Estos grupos est\u00e1n bien conectados internacionalmente con institutos de investigaci\u00f3n l\u00edderes y, si se les proporciona una financiaci\u00f3n adecuada, tienen la capacidad de coordinar la investigaci\u00f3n necesaria que puede llevar a un diagn\u00f3stico correcto y tratamientos apropiados para los pacientes con EM\/SFC.<\/strong><\/span>\u00a0<\/strong><\/p>\n

Mientras tanto, la reciente \u00abEncuesta EMEA de Pacientes con EM\/SFC en Europa\u00bb<\/strong> muestra que m\u00e1s de 11,000 pacientes con EM\/SFC est\u00e1n de acuerdo en que los sistemas de salud est\u00e1n fallando<\/strong>, y se encuentran sin atenci\u00f3n m\u00e9dica adecuada y sin apoyo financiero y social.<\/span>\u00a0<\/span><\/p>\n<\/div>\n

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CONFESQ agradece sinceramente a la OMS Europa por su mensaje en video para la Semana de la Conferencia Internacional de Investigaci\u00f3n sobre EM de Invest in ME 2024,<\/strong> una Conferencia apoyada por nuestra organizaci\u00f3n como miembro de la ‘Alianza Europea de EM’. Agradecemos a la OMS Europa por escuchar nuestro llamado a la urgente necesidad de que los gobiernos aborden la cuesti\u00f3n \u00e9tica de c\u00f3mo proporcionar asistencia inmediata a los pacientes con EM\/SFC cuyos s\u00edntomas severamente discapacitantes son \u2018invisibles\u2019 o \u2018m\u00e9dicamente inexplicables\u2019, dej\u00e1ndolos sin un diagn\u00f3stico oportuno y la asistencia que requieren, y violando as\u00ed sus derechos humanos b\u00e1sicos y los derechos bajo la ‘Convenci\u00f3n de las Naciones Unidas sobre los Derechos de las Personas con Discapacidad’.<\/i><\/p>\n

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INGL\u00c9S:<\/strong><\/span><\/p>\n

In 2023 the European ME Alliance<\/strong> received \u2018<\/span> official Non-State Actor accreditation<\/i><\/a><\/strong>\u2019<\/strong> status from WHO\u2019s Regional Office for Europe<\/strong> during WHO Europe\u2019s 73rd Regional Committee Meeting (RC73).<\/span>
\nThis status allows EMEA to participate in WHO Europe Regional Meetings and to make official statements on agenda topics of interest<\/strong>. <\/span>In this way, EMEA aims to increase awareness, recognition, and action on ME\/CFS by WHO Europe\u2019s 53 member countries.<\/strong><\/span>\u00a0<\/strong><\/p>\n

EMEA is committed to partner with WHO Europe and work together to support people with ME<\/strong> and their carers, in Europe, and make rapid progress to improve the research and treatment of ME across our continent.<\/span>\u00a0<\/span><\/p>\n

The European ME Alliance (EMEA) supports the annual Invest in ME Research International ME Conference week organised by its UK member \u2018<\/strong><\/span>Invest in ME Research<\/a>\u2019.<\/strong><\/p>\n

We are extremely gratefulthat the Conference will be opened with a video message below from WHO Europe, helping raise awareness about the still unmet needs of ME\/CFS patients, despite it being recognised as a neurological illness over 50 years ago by WHO.<\/strong><\/span>\u00a0<\/strong><\/p>\n

We thank WHO Europe for being partners in supporting International ME Conference Week by providing this video from Dr Cathal Morgan, at the WHO Regional Office for Europe, for delegates to the <\/span>Young EMERG Early-career researcher workshop<\/span><\/a>, the <\/span>13th Biomedical Research into ME Colloquium #BRMEC13<\/span><\/a>, and the <\/span>16th International ME Conference #IIMEC16<\/span><\/a> and to participants at the <\/span>European ME Research Group-NIH workshop<\/span><\/a> that will be taking place during the week.<\/span>\u00a0<\/span><\/p>\n

In the absence of official recognition and funding of ME\/CFS across Europe, it has been left to EMEA and its member organisations to initiate and fund research in Europe and to organise this Conference, which brings together world-renowned researchers, clinicians, and patient organisations to facilitate international collaboration on biomedical research into ME\/CFS.<\/strong><\/p>\n

These groups are well connected internationally with leading research institutes and, if provided with adequate funding, they have the capability to coordinate the necessary research that can lead to a correct diagnosis and appropriate treatments for ME\/CFS patients.<\/strong><\/p>\n

In the meantime, the recent \u2018EMEA Survey of ME\/CFS Patients in Europe\u2019 shows that over 11,000 ME\/CFS patients agree that healthcare systems are failing them,<\/strong> and they find themselves without adequate medical care and financial and social support.<\/p>\n<\/div>\n

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CONFESQ sincerely thanks WHO Europe for its video address for the 2024\u00a0<\/i>Invest in ME Research International ME Conference week<\/a><\/i>, a Conference supported by our organization as a member of the\u00a0<\/i>‘European ME Alliance’<\/a><\/i><\/strong>.<\/strong> We thank WHO Europe for hearing our call for the urgent need for governments to\u00a0address the ethical question of how to provide immediate assistance to ME\/CFS patients whose severely disabling symptoms are \u2018invisible\u2019 or \u2018medically unexplained\u2019, leaving them without a timely diagnosis and the assistance they require, and thus violating their basic human rights and those under the\u00a0<\/i>‘UN Convention on the Rights of Persons with Disabilities’<\/a><\/i>.<\/i><\/p>\n

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Fuente de informaci\u00f3n: https:\/\/www.europeanmealliance.org\/emea-who-message-imecw2024.shtml<\/span><\/span><\/a>\u00a0<\/span><\/p>\n

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