{"id":5655,"date":"2016-12-06T12:46:41","date_gmt":"2016-12-06T11:46:41","guid":{"rendered":"http:\/\/francelyme.fr\/?p=5655"},"modified":"2019-07-13T11:07:10","modified_gmt":"2019-07-13T09:07:10","slug":"participation-au-colloque-associations-et-volontariat-a-laphp-lengagement-aupres-des-patients-pitie-salpetriere-17-novembre-2016","status":"publish","type":"post","link":"https:\/\/francelyme.fr\/site\/participation-au-colloque-associations-et-volontariat-a-laphp-lengagement-aupres-des-patients-pitie-salpetriere-17-novembre-2016\/","title":{"rendered":"Participation au colloque \u00ab\u00a0Associations et Volontariat \u00e0 l&rsquo;APHP : l&rsquo;engagement aupr\u00e8s des patients\u00a0\u00bb, Piti\u00e9-Salp\u00eatri\u00e8re, 17 novembre 2016"},"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\/participation-au-colloque-associations-et-volontariat-a-laphp-lengagement-aupres-des-patients-pitie-salpetriere-17-novembre-2016\/\" 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>\t\t\t\t&nbsp;<\/p>\n<p>Le 17 novembre 2016, Pierre Hecker (Vice-Pr\u00e9sident de France Lyme et membre du CA de la FFMVT) \u00e9tait aux c\u00f4t\u00e9s du Pr Perronne pour repr\u00e9senter la FFMVT \u00e0 la journ\u00e9e \u00ab\u00a0Associations et Volontariat \u00e0 l&rsquo;APHP : l&rsquo;engagement aupr\u00e8s des patients\u00a0\u00bb.<\/p>\n<p>L&rsquo;amphith\u00e9\u00e2tre \u00e9tait plein. Merci \u00e0 l&rsquo;\u00e9quipe organisatrice de la Piti\u00e9, notamment Sophie Bentegeat ,pour son int\u00e9r\u00eat pour notre cause.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>PIERRE HECKER<\/strong><\/p>\n<p>\u00a0\u00bb La maladie de Lyme a pris un essor important \u00e0 partir des ann\u00e9es 2000, avec une augmentation des cas due \u00e0 la croissance des loisirs verts et \u00e0 l\u2019augmentation du nombre de tiques, elle-m\u00eame due \u00e0 des facteurs climatiques et d\u2019exploitation des for\u00eats. Le nombre de malades a donc augment\u00e9, alors que les m\u00e9decins ne connaissaient pas suffisamment cette pathologie. Ces malades se sont ainsi rassembl\u00e9s en associations, qui ont \u00e9t\u00e9 questionn\u00e9es par de nombreuses autres personnes. Celles-ci reconnaissaient les sympt\u00f4mes de la maladie de Lyme. Des t\u00e9moignages sont sortis dans la presse, des lettres ouvertes ont \u00e9t\u00e9 adress\u00e9es \u00e0 la ministre et les malades ont commenc\u00e9 \u00e0 \u00eatre \u00e9cout\u00e9s. Le HCSP a indiqu\u00e9 que les malades disposaient d\u2019une certaine connaissance de cette maladie, mais n\u2019\u00e9taient pas suffisamment robustes en mati\u00e8re de discours m\u00e9dical. C\u2019est alors que nous avons cr\u00e9\u00e9 notre f\u00e9d\u00e9ration, qui rassemble m\u00e9decins, malades et chercheurs. Ensuite, le plan de lutte contre les maladies vectorielles \u00e0 tiques a \u00e9t\u00e9 annonc\u00e9 par la ministre.\u00a0\u00bb<\/p>\n<p>&nbsp;<\/p>\n<p><strong>CHRISTIAN PERRONNE<\/strong><\/p>\n<p>\u00a0\u00bb Je suis les malades et la maladie de Lyme depuis vingt ans. Notre f\u00e9d\u00e9ration a un an et elle a permis de v\u00e9ritablement structurer les revendications des malades. Lorsque cette maladie a \u00e9t\u00e9 d\u00e9crite il y a environ 35 ans aux Etats-Unis, les m\u00e9decins ont cru qu\u2019il s\u2019agissait d\u2019une maladie locale et rare. Ils l\u2019ont assortie d\u2019un test non fiable, qui ne permettait de la diagnostiquer que tr\u00e8s rarement. Les recherches ont augment\u00e9 sur ce sujet et d\u2019autres maladies similaires ont \u00e9t\u00e9 identifi\u00e9es, regroup\u00e9es \u00e0 pr\u00e9sent dans la cat\u00e9gorie des \u00ab maladies vectorielles \u00e0 tiques \u00bb. Avec des coll\u00e8gues europ\u00e9ens, nous avons effectu\u00e9 une \u00e9tude qui n\u2019est pas encore publi\u00e9e, mais dans laquelle nous estimons qu\u2019un million de nouveaux cas apparaissent chaque ann\u00e9e en Europe. Il ne s\u2019agit donc pas d\u2019une maladie rare. Or les signes cliniques de cette maladie sont soit subjectifs, soit g\u00e9n\u00e9raux lorsqu\u2019ils sont objectifs. Il est donc difficile de la diagnostiquer, \u00e0 tel point qu\u2019un grand nombre des malades \u00e9taient dirig\u00e9s vers la psychiatrie. Le niveau politique et le HCSP ont alors reconnu que nous nous trouvions face \u00e0 un grave probl\u00e8me de sant\u00e9 publique, avec des milliers de patients en errance. Les tests de d\u00e9pistage non fiables continuent pourtant d\u2019\u00eatre consid\u00e9r\u00e9s comme les tests officiels, tandis que de nombreux malades continuent d\u2019\u00eatre en errance et que certains se sont m\u00eame suicid\u00e9s. Associations et volontariat \u00e0 l\u2019AP-HP : l\u2019Engagement aupr\u00e8s des patients \uf07d Page 36 Paris, le 17 novembre 2016 Si nous disposions des bons outils diagnostics et biologiques, nous pourrions soigner davantage de patients. Ces derniers sont souvent contraints de se faire soigner en Allemagne ou aux Etats-Unis, ce qui co\u00fbte tr\u00e8s cher. Je fonde beaucoup d\u2019espoir dans la recherche et le financement d\u2019un grand projet de l\u2019agence nationale de recherche pourrait permettre de trouver des solutions. Le chemin reste encore long toutefois. \u00a0\u00bb<\/p>\n<p><strong>PIERRE HECKER <\/strong><\/p>\n<p>\u00ab\u00a0Dans notre f\u00e9d\u00e9ration, \u00e0 travers une \u00e9troite collaboration entre malades et professionnels, nous organisons des formations de m\u00e9decins, gr\u00e2ce au concours de m\u00e9decins sp\u00e9cialistes. Trois associations ont cr\u00e9\u00e9 cette f\u00e9d\u00e9ration et nous recevons chaque jour des dizaines de questions de malades en errance. Nous d\u00e9fendons \u00e9galement les m\u00e9decins qui s\u2019\u00e9loignent du protocole officiel et qui sont poursuivis pour cette raison. \u00a0\u00bb<\/p>\n<p><a href=\"http:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/Actes-journ\u00e9e-engagement-associatif-et-volontaire-17-11-2016.pdf\">actes-journee-engagement-associatif-et-volontaire-17-11-2016<\/a><\/p>\n<p><a href=\"http:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15032222_1443353412356409_3014514080740440875_n-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-medium wp-image-5659\" src=\"http:\/\/www.francelyme.fr\/WordPress3\/Documents\/2016\/12\/15032222_1443353412356409_3014514080740440875_n-1-287x300.jpg\" alt=\"15032222_1443353412356409_3014514080740440875_n\" width=\"287\" height=\"300\" srcset=\"https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15032222_1443353412356409_3014514080740440875_n-1-287x300.jpg 287w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15032222_1443353412356409_3014514080740440875_n-1.jpg 528w\" sizes=\"auto, (max-width: 287px) 100vw, 287px\" \/><\/a><\/p>\n<p><a href=\"http:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15032077_1443353272356423_4702600980626928994_n.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-medium wp-image-5656\" src=\"http:\/\/www.francelyme.fr\/WordPress3\/Documents\/2016\/12\/15032077_1443353272356423_4702600980626928994_n-300x169.jpg\" alt=\"15032077_1443353272356423_4702600980626928994_n\" width=\"300\" height=\"169\" srcset=\"https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15032077_1443353272356423_4702600980626928994_n-300x169.jpg 300w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15032077_1443353272356423_4702600980626928994_n-768x432.jpg 768w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15032077_1443353272356423_4702600980626928994_n.jpg 960w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<p><a href=\"http:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15095016_1443353312356419_6830593199750790267_n.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-medium wp-image-5661\" src=\"http:\/\/www.francelyme.fr\/WordPress3\/Documents\/2016\/12\/15095016_1443353312356419_6830593199750790267_n-300x169.jpg\" alt=\"15095016_1443353312356419_6830593199750790267_n\" width=\"300\" height=\"169\" srcset=\"https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15095016_1443353312356419_6830593199750790267_n-300x169.jpg 300w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15095016_1443353312356419_6830593199750790267_n-768x432.jpg 768w, https:\/\/francelyme.fr\/site\/wp-content\/uploads\/2016\/12\/15095016_1443353312356419_6830593199750790267_n.jpg 960w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>\t\t<\/p>\n<div class=\"like-button\" style=\"float: 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-->\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":5656,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,38,41,46,9,104],"tags":[],"class_list":["post-5655","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actions","category-en-regions","category-france-lyme","category-ile-de-france-en-regions","category-prevention","category-recherche"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Participation au colloque &quot;Associations et Volontariat \u00e0 l&#039;APHP : l&#039;engagement aupr\u00e8s des patients&quot;, Piti\u00e9-Salp\u00eatri\u00e8re, 17 novembre 2016 - Association France Lyme<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link 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