{"id":14284,"date":"2023-03-07T20:21:00","date_gmt":"2023-03-07T19:21:00","guid":{"rendered":"https:\/\/francelyme.fr\/site\/?p=14284"},"modified":"2024-03-02T19:13:39","modified_gmt":"2024-03-02T18:13:39","slug":"rapport-final-du-tick-borne-disease-working-group","status":"publish","type":"post","link":"https:\/\/francelyme.fr\/site\/rapport-final-du-tick-borne-disease-working-group\/","title":{"rendered":"Rapport final du Tick-Borne Disease Working Group pour le Congr\u00e8s des USA"},"content":{"rendered":"<div class=\"like-button\" style=\"float: right; clear: both; text-align: right; width = 100%;\">\n<!-- Facebook Like Button Vivacity Infotech BEGIN -->\n<div class=\"fb-like\" data-href=\"https:\/\/francelyme.fr\/site\/rapport-final-du-tick-borne-disease-working-group\/\" data-layout=\"box_count\" data-action=\"like\" data-show-faces=\"false\" data-size=\"large\" data-width=\"450\" data-share=\"1\" ><\/div><\/div>\n<!-- Facebook Like Button Vivacity Infotech END -->\n<div id=\"fb-root\"><\/div>\n\n<p>Apr\u00e8s 6 ann\u00e9es de travail intense, le \u00ab&nbsp;Tick-Borne Disease Working Group&nbsp;\u00bb (groupe de Travail am\u00e9ricain sur la maladie de Lyme et les MVT) vient de remettre son rapport d\u00e9finitif au Congr\u00e8s am\u00e9ricain.<\/p>\n\n\n\n<p>Ce groupe de travail, mandat\u00e9 par le HHS, l\u2019\u00e9quivalent du Minist\u00e8re de la Sant\u00e9 \u00e0 l\u2019\u00e9chelon f\u00e9d\u00e9ral US, r\u00e9unissait dans ses 21 sous-comit\u00e9s un grand nombre de repr\u00e9sentants d\u2019associations de malades, de patients-experts, de m\u00e9decins et de chercheurs d\u2019horizons divers. Il a \u00e9galement permis l\u2019audition et une large participation du public, par le biais de t\u00e9moignages et de questionnaires, ainsi que celle de multiples experts reconnus de toutes les sp\u00e9cialit\u00e9s m\u00e9dicales.<\/p>\n\n\n\n<p>Le rapport soumis au Congr\u00e8s propose en quelque sorte un <strong>nouveau Plan Lyme pour les Etats-Unis<\/strong>, en formulant 20 recommandations de politique sanitaire pour am\u00e9liorer la prise en charge des malades et d\u00e9velopper la recherche.<\/p>\n\n\n\n<p>Parmi les faits marquants&nbsp;:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li><strong>Ce rapport reconna\u00eet explicitement l\u2019existence de la forme persistante ou chronique de la maladie<\/strong>,(en anglais \u00ab&nbsp;Persistent Lyme Disease \/ Chronic Lyme Disease, ou PLD\/CLD \u00bb), et appelle d\u00e8s sa premi\u00e8re recommandation \u00e0 investir massivement dans la recherche pour la diagnostiquer et la traiter,<\/li><li>Il fait le lien avec les sympt\u00f4mes observ\u00e9s sur le Covid Long, et appelle \u00e0 des travaux communs sur les deux pathologies,<\/li><li>Pour le diagnostic, ce rapport constate que beaucoup de patients t\u00e9moignent <strong>ne jamais avoir observ\u00e9 d\u2019\u00e9ryth\u00e8me migrant<\/strong>, avec pour cons\u00e9quence le rejet du diagnostic Lyme par les m\u00e9decins, et beaucoup de souffrances \u00e0 la cl\u00e9,<\/li><li>Pour le traitement \u00ab&nbsp;de base&nbsp;\u00bb de la phase initiale de la maladie, il fait ce constat&nbsp;: \u00ab&nbsp;parmi les malades diagnostiqu\u00e9s maladie de Lyme \u00e0 tous les stades, jusqu\u2019\u00e0 30% de patients pr\u00e9sentent des sympt\u00f4mes de Lyme malgr\u00e9 un traitement antibiotique, suivant les \u00e9tudes&nbsp;\u00bb,<\/li><li>Il alerte les m\u00e9decins sur les co-infections : \u00ab&nbsp;les co-infections avec plus d\u2019un pathog\u00e8ne transmis par les tiques <strong>ne sont pas rares<\/strong>&nbsp;\u00bb, elles doivent faire l\u2019objet d\u2019une attention particuli\u00e8re et d\u2019une recherche vigilante lors du diagnostic,<\/li><li>Ce rapport indique que la <strong>transmission par voie sexuelle et \u00ab&nbsp;verticale&nbsp;\u00bb<\/strong> de la bact\u00e9rie responsable de la Borreliose <strong>existe<\/strong>, m\u00eame si elle est consid\u00e9r\u00e9e rare chez les humains, et demande un investissement en recherche sur ces sujets,<\/li><li>Il formule plusieurs recommandations sur la cr\u00e9ation de bio banques (pour les tiques, et pour les pr\u00e9l\u00e8vements humains), \u00e0 des fins de recherche,<\/li><li>Il rappelle que la maladie de Lyme n\u2019est pas du tout une maladie rare. C\u2019est m\u00eame une maladie tr\u00e8s r\u00e9pandue, puisque officiellement 476 000 personnes sont infect\u00e9es annuellement aux USA, d\u2019apr\u00e8s le CDC, en 2022. Et il indique qu\u2019il y a beaucoup plus de cas en r\u00e9alit\u00e9, car bon nombre de malades ne sont pas diagnostiqu\u00e9s actuellement.<\/li><\/ul>\n\n\n\n<p>Les conclusions de ce rapport sont tr\u00e8s fortes, les recommandations qu\u2019il propose peuvent vraiment faire bouger les choses pour les malades et faire progresser les connaissances sur la maladie. Ce document va maintenant \u00eatre \u00e9tudi\u00e9 par le Congr\u00e8s, et nous suivrons de pr\u00e8s les suites qui seront donn\u00e9es.<\/p>\n\n\n\n<p>Comme le disent nos amis de l\u2019association de malades Lymedisease.org, qui souhaitaient la poursuite du groupe de travail, il faut poursuivre ces \u00e9changes entre les acteurs du Lyme&nbsp;(patients, patients-experts, m\u00e9decins, chercheurs), car beaucoup reste \u00e0 faire.<\/p>\n\n\n\n<p class=\"has-text-color\" style=\"color:#1e02ac\">Au-del\u00e0 du contenu du rapport qui est d\u00e9j\u00e0 assez impressionnant, ce que je retiens de toute ces travaux men\u00e9s par ce groupe, c\u2019est que quand on r\u00e9unit ensemble des patients, des m\u00e9decins, des chercheurs, pour un travail dans la dur\u00e9e, dans un climat de respect, d\u2019\u00e9coute et de coop\u00e9ration, en faisant appel \u00e0 toutes les comp\u00e9tences, en utilisant vraiment toute la connaissance accumul\u00e9e par les m\u00e9decins et par les malades, on obtient un r\u00e9sultat tr\u00e8s diff\u00e9rent et beaucoup plus riche que celui obtenu par les m\u00e9thodes habituelles en vigueur.<\/p>\n\n\n\n<p>C\u2019est un message que l&rsquo;association a relay\u00e9 aupr\u00e8s de la Haute Autorit\u00e9 de Sant\u00e9, en esp\u00e9rant qu\u2019il puisse inspirer les autorit\u00e9s sanitaires fran\u00e7aises pour am\u00e9liorer leurs pratiques.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.lymedisease.org\/minority-response-tbdwg-2022\/\" target=\"_blank\" rel=\"noreferrer noopener\">L&rsquo;article de lymedisease.org1<\/a> et <a href=\"https:\/\/www.lymedisease.org\/tbdwg-report-patient-contributions\/\" target=\"_blank\" rel=\"noreferrer noopener\">2 nd article<\/a><\/p>\n\n\n\n<p>Le rapport : <a href=\"https:\/\/www.hhs.gov\/sites\/default\/files\/tbdwg-2022-report-to-congress.pdf\">https:\/\/www.hhs.gov\/sites\/default\/files\/tbdwg-2022-report-to-congress.pdf<\/a><\/p>\n<div class=\"like-button\" style=\"float: right; clear: both; text-align: right; width = 100%;\">\n<!-- Facebook Like Button Vivacity Infotech BEGIN -->\n<div class=\"fb-like\" data-href=\"https:\/\/francelyme.fr\/site\/rapport-final-du-tick-borne-disease-working-group\/\" data-layout=\"box_count\" data-action=\"like\" data-show-faces=\"false\" data-size=\"large\" data-width=\"450\" data-share=\"1\" ><\/div><\/div>\n<!-- Facebook Like Button Vivacity Infotech END -->\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":17,"featured_media":14295,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[107,287],"tags":[],"class_list":["post-14284","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-international","category-nouvelles"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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