{"id":15202,"date":"2022-09-28T18:04:00","date_gmt":"2022-09-28T16:04:00","guid":{"rendered":"https:\/\/francelyme.fr\/site\/?p=15202"},"modified":"2023-09-06T18:16:47","modified_gmt":"2023-09-06T16:16:47","slug":"editorial-de-septembre-2022","status":"publish","type":"post","link":"https:\/\/francelyme.fr\/site\/editorial-de-septembre-2022\/","title":{"rendered":"\u00c9ditorial d&rsquo;octobre 2022"},"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\/editorial-de-septembre-2022\/\" 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<p><strong>L\u2019actualit\u00e9 nationale<\/strong><\/p>\n<p>En Septembre, le groupe de travail de la Haute Autorit\u00e9 de Sant\u00e9 (HAS) a repris ses travaux de r\u00e9vision des Recommandations de Bonnes Pratiques Lyme \u00e9tablies en 2018. Au sein de ce groupe, nous portons la voix des malades, dans un esprit constructif, avec un seul objectif : am\u00e9liorer leur situation, et tout particuli\u00e8rement leur prise en charge par le syst\u00e8me de sant\u00e9.<\/p>\n<p>Le texte de 2018 a apport\u00e9 certaines avanc\u00e9es face \u00e0 l\u2019errance th\u00e9rapeutique et \u00e0 la souffrance des patients, comme :<br>&#8211; la reconnaissance d\u2019un Lyme possiblement chronique (ou persistant) avec le syndrome SPPT (Symptomatologie\/Syndrome persistant(e) polymorphe apr\u00e8s une possible piq\u00fbre de tique)<br>&#8211; la primaut\u00e9 du diagnostic clinique sur le r\u00e9sultat s\u00e9rologique,<br>&#8211; la possibilit\u00e9 de r\u00e9aliser un traitement d\u2019\u00e9preuve par antibiotiques,<br>&#8211; la mise en place de centres sp\u00e9cialis\u00e9s MVT pour accompagner les m\u00e9decins g\u00e9n\u00e9ralistes sur les cas s\u00e9v\u00e8res, (m\u00eame si la prise en charge des malades dans ces centres n\u2019est pas satisfaisante aujourd\u2019hui)<\/p>\n<p>Pour nous, bien s\u00fbr, il n\u2019est pas possible de revenir en arri\u00e8re par rapport \u00e0 ces avanc\u00e9es, et nous voulons aller au-del\u00e0 de ce texte, qui comporte un certain nombre d\u2019insuffisances, par exemple :<br>&#8211; la prise en compte tr\u00e8s insuffisante des autres infections transmises par les tiques (bab\u00e9siose, bartonellose, anaplasmose, etc.),<br>&#8211; la tendance \u00e0 ne pas consid\u00e9rer comme infect\u00e9s les malades n\u2019ayant pas observ\u00e9 d\u2019\u00e9ryth\u00e8me migrant,<br>&#8211; la surestimation de la fiabilit\u00e9 des tests s\u00e9rologiques, notamment du test ELISA,<br>&#8211; l\u2019absence de r\u00e9flexion ou de voies de recherche sur les autres modes de transmission potentielle de la maladie.<\/p>\n<p>Vous pouvez compter sur nous pour travailler activement dans le groupe et faire avancer ces sujets. Les travaux devraient s\u2019achever au Printemps 2023, avec la publication de nouvelles Recommandations de Bonnes Pratiques. Nous reviendrons vers vous \u00e0 ce moment pour en faire le bilan.<\/p>\n<p>Sur un tout autre plan, l\u2019actualit\u00e9 nationale a \u00e9t\u00e9 marqu\u00e9e, le 13 Septembre, par la convocation du Pr Christian Perronne par le Conseil R\u00e9gional de l\u2019Ordre des M\u00e9decins d\u2019Ile-de-France. Cette convocation faisait suite aux prises de position et aux d\u00e9clarations du Pr Perronne lors de la crise sanitaire du Covid. En tant qu\u2019association de malades souffrant de la maladie de Lyme, nous n\u2019avons aucune l\u00e9gitimit\u00e9 pour nous exprimer sur ce sujet.<\/p>\n<p>Mais nous savons ce que nous devons au Pr Perronne pour Lyme, pour faire conna\u00eetre la maladie, pour faire reconna\u00eetre l\u2019existence de la forme chronique ou persistante, et pour soulager et soigner ses nombreux patients.<\/p>\n<p>Christian Perronne est l\u2019un des rares professeurs de m\u00e9decine en France \u00e0 avoir \u0153uvr\u00e9 sans rel\u00e2che pendant des ann\u00e9es pour que notre syst\u00e8me de sant\u00e9 prenne en charge les centaines de milliers de malades qui souffrent de sympt\u00f4mes lourds, attribu\u00e9s aux maladies transmises par les tiques, dont la borr\u00e9liose.<\/p>\n<p>Nous lui t\u00e9moignons toute notre reconnaissance pour ce qu\u2019il a fait pour les malades de Lyme.<\/p>\n<p><\/p>\n<p><strong>L\u2019actualit\u00e9 de France Lyme<\/strong><\/p>\n<p>Pour parler de nous maintenant, les activit\u00e9s des b\u00e9n\u00e9voles dans les sections locales ont retrouv\u00e9 le niveau d\u2019avant Covid, c\u2019est une tr\u00e8s bonne nouvelle.<\/p>\n<p>Merci \u00e0 toutes les \u00e9quipes de b\u00e9n\u00e9voles impliqu\u00e9es dans les actions d\u2019information et de pr\u00e9vention men\u00e9es sur le terrain ce dernier mois, dans les D\u00e9partements et les R\u00e9gions, notamment : en Essonne, en Bourgogne, en Is\u00e8re, en Vend\u00e9e, en Creuse, dans les Pyr\u00e9n\u00e9es-Atlantiques, etc.<br>Saluons au passage les prochaines actions locales pr\u00e9vues :<\/p>\n<p>en for\u00eat de S\u00e9nart, en Essonne, le 9 Octobre,<br>\u00e0 St Dizier Masbaraud, dans la Creuse, le 8 Novembre,<br>\u00e0 Chalon-sur-Sa\u00f4ne, dans la Sa\u00f4ne, le 22 Octobre,<br>en Pyr\u00e9n\u00e9es-Atlantiques, (o\u00f9 l\u2019on cherche d\u2019ailleurs des b\u00e9n\u00e9voles pour distribuer des panneaux, merci de vous signaler ! ..voir les d\u00e9tails ci-dessous)<br>A l\u2019\u00e9chelle nationale, merci \u00e0 Nathalie pour l\u2019organisation des VisioLyme, qui sont toujours une opportunit\u00e9 d\u2019\u00e9change int\u00e9ressante pour les malades et les aidants, voir le lien ci-dessous,<br>Et bien s\u00fbr, plus g\u00e9n\u00e9ralement, un grand merci \u00e0 tous les b\u00e9n\u00e9voles qui travaillent dans les services de l\u2019Association, et qui assurent les missions fondamentales de France Lyme : Ecouter et Soutenir les malades, Informer sur les MVT, D\u00e9velopper la connaissance, D\u00e9fendre et Repr\u00e9senter les personnes souffrant de MVT.<\/p>\n<p>Amicalement,<\/p>\n<p>Fr\u00e9d\u00e9ric MAIRE<br>Pr\u00e9sident de France Lyme<\/p>\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"1024\" src=\"http:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite-1024x1024.jpg\" alt=\"\" class=\"wp-image-15197\" srcset=\"https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite-1024x1024.jpg 1024w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite-300x300.jpg 300w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite-150x150.jpg 150w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite-768x768.jpg 768w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite-90x90.jpg 90w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite-75x75.jpg 75w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2023\/09\/Editorial-Carre-Suivez-lactualite.jpg 1080w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n\n\n\n<p><a href=\"https:\/\/www.helloasso.com\/associations\/association-france-lyme\/adhesions\/adhesion-membre-ami\" target=\"_blank\" rel=\"noreferrer noopener\">Devenez membre ami pour recevoir la lettre d&rsquo;information<\/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\/editorial-de-septembre-2022\/\" 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":15197,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[288],"tags":[],"class_list":["post-15202","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-editoriaux"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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