[et_pb_section fb_built=”1″ _builder_version=”4.25.1″ _module_preset=”default” background_image=”https:\/\/icancme.ca\/wp-content\/uploads\/banner-bg.jpg.webp” custom_padding=”||0px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.25.1″ _module_preset=”default” width=”90%” max_width=”100%” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.25.1″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.25.1″ _dynamic_attributes=”content” _module_preset=”default” text_font=”Montserrat||||||||” text_text_color=”#FFFFFF” text_font_size=”48px” global_colors_info=”{}”]@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.25.1″ _module_preset=”default” width=”100%” max_width=”100%” custom_padding=”||0px||false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.25.1″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.25.1″ _module_preset=”default” global_colors_info=”{}”][dipl_breadcrumb breadcrumb_layout=”layout2″ separator_color=”#0C71C3″ _builder_version=”4.25.1″ _module_preset=”default” global_text_settings_text_align=”center” global_text_settings_font_size=”15px” text_font=”|600||on|||||” text_text_color=”#0C71C3″ background_color=”#FFFFFF” width=”100%” module_alignment=”right” custom_padding=”1vw|1vw|1vw|1vw|true|true” global_colors_info=”{}”][\/dipl_breadcrumb][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.25.1″ _module_preset=”default” global_colors_info=”{}”][et_pb_row column_structure=”1_4,3_4″ use_custom_gutter=”on” gutter_width=”2″ _builder_version=”4.27.0″ _module_preset=”default” width=”90%” max_width=”100%” custom_padding=”0px||0px||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.27.0″ _module_preset=”default” background_color=”#f0f5f9″ sticky_position=”top” sticky_position_tablet=”none” sticky_position_phone=”none” sticky_position_last_edited=”on|tablet” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.3″ _module_preset=”default” text_text_color=”#FFFFFF” background_color=”gcid-fea9fa74-a3a6-4bb5-9e3c-fcd8a2430123″ custom_margin=”||0px|||” custom_padding=”1vw||1vw|2vw|true|false” global_colors_info=”{%22gcid-fea9fa74-a3a6-4bb5-9e3c-fcd8a2430123%22:%91%22background_color%22%93}”]<\/p>\n

RESOURCES<\/p>\n

[\/et_pb_text][et_pb_menu menu_id=”217″ active_link_color=”#247a62″ module_class=”lwp-vertical-menu lwp-hide-mobile-menu” _builder_version=”4.27.3″ _module_preset=”default” menu_font=”Montserrat|700|||||||” menu_text_color=”#000000″ menu_font_size=”16px” background_color=”#f0f5f9″ custom_padding=”1vw|2vw|1vw|2vw|true|true” global_colors_info=”{%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22active_link_color%22%93}”][\/et_pb_menu][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.25.1″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.3″ _module_preset=”default” header_font=”Merriweather||||||||” header_2_font=”Merriweather||||||||” header_2_text_color=”gcid-fea9fa74-a3a6-4bb5-9e3c-fcd8a2430123″ header_2_font_size=”30px” global_colors_info=”{%22gcid-fea9fa74-a3a6-4bb5-9e3c-fcd8a2430123%22:%91%22header_2_text_color%22%93}”]<\/p>\n

Ressources pour les patients<\/h2>\n

Cette section vise \u00e0 fournir aux malades un acc\u00e8s rapide et commode \u00e0 plus d\u2019informations sur les points suivants : diagnostic et prise en charge de l\u2019enc\u00e9phalomy\u00e9lite myalgique ; diagnostic et prise en charge des conditions comorbides ; consid\u00e9rations particuli\u00e8res ; demandes d\u2019accommodement et programmes d\u2019assistance invalidit\u00e9.<\/p>\n

Nous vous invitons \u00e0 la consulter r\u00e9guli\u00e8rement et \u00e0 l\u2019ajouter \u00e0 vos favoris pour y acc\u00e9der facilement au moment de vous pr\u00e9parer en vue d\u2019une consultation.[\/et_pb_text][et_pb_text _builder_version=”4.27.3″ _module_preset=”default” header_2_font=”Montserrat|300|||||||” header_2_text_align=”center” header_2_text_color=”gcid-81f9ad88-9858-401f-a912-9ef6823933cf” background_color=”gcid-primary-color” custom_margin=”||0px||false|false” custom_padding=”1vw||1vw||true|false” global_colors_info=”{%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22header_2_text_color%22%93,%22gcid-primary-color%22:%91%22background_color%22%93}”]<\/p>\n

Liens rapides<\/h2>\n

[\/et_pb_text][dipl_button inline_buttons=”on” buttons_alignment=”center” _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||0px||false|false” custom_padding=”|2vw|0px|2vw|false|false” custom_css_main_element=”background: #f0f5f9;” global_colors_info=”{}”][dipl_button_item button_text=”\u00c9l\u00e9ments de base de l\u2019enc\u00e9phalomy\u00e9lite myalgique” button_url=”#understanding” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}”][\/dipl_button_item][dipl_button_item button_text=”Qu\u2019est-ce que l\u2019enc\u00e9phalomy\u00e9lite myalgique ?” button_url=”#what” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}”][\/dipl_button_item][dipl_button_item button_text=”Enc\u00e9phalomy\u00e9lite myalgique \u2013 Diagnostic et prise en charge” button_url=”#ME” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}”][\/dipl_button_item][dipl_button_item button_text=”Conditions comorbides fr\u00e9quentes \u2013 Diagnostic et prise en charge” button_url=”#common” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}”][\/dipl_button_item][\/dipl_button][dipl_button inline_buttons=”on” buttons_alignment=”center” _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||0px||false|false” custom_padding=”|2vw|0px|2vw|false|false” hover_enabled=”0″ custom_css_main_element=”background: #f0f5f9;” global_colors_info=”{}” sticky_enabled=”0″][dipl_button_item button_text=”Ressources pour les proches et les activistes” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” hover_enabled=”0″ border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}” button_url=”#proches” sticky_enabled=”0″][\/dipl_button_item][dipl_button_item button_text=”Consid\u00e9rations particuli\u00e8res” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}”][\/dipl_button_item][dipl_button_item button_text=”Ressources concernant le rythme des activit\u00e9s” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}”][\/dipl_button_item][\/dipl_button][dipl_button inline_buttons=”on” buttons_alignment=”center” _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||0px||false|false” custom_padding=”|2vw|0px|2vw|false|false” hover_enabled=”0″ custom_css_main_element=”background: #f0f5f9;” global_colors_info=”{}” sticky_enabled=”0″][dipl_button_item button_text=”Se pr\u00e9parer pour votre examen” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” hover_enabled=”0″ border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}” button_url=”#prepare” sticky_enabled=”0″][\/dipl_button_item][dipl_button_item button_text=”D\u00e9marches reli\u00e9es aux demandes d\u2019accommodement et aux programmes d\u2019assistance invalidit\u00e9” button_bg_color=”#FFFFFF” button_custom_margin=”|10px||10px|false|true” _builder_version=”4.27.4″ _module_preset=”default” button_text_color=”#000000″ button_font_size=”14px” hover_enabled=”0″ border_radii=”on|1px|1px|1px|1px” border_width_all=”1px” border_color_all=”#d9e4ec” global_colors_info=”{}” button_url=”#demande” sticky_enabled=”0″][\/dipl_button_item][\/dipl_button][et_pb_text module_id=”understanding” _builder_version=”4.27.3″ _module_preset=”default” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” global_colors_info=”{}”]<\/p>\n

\u00c9l\u00e9ments de base de l\u2019enc\u00e9phalomy\u00e9lite myalgique<\/h2>\n

La documentation qui suit constitue une ressource pour comprendre la maladie et ses conditions comorbides.<\/p>\n

Quoiqu\u2019on ne connaisse \u00e0 l\u2019heure actuelle aucun traitement \u00e9tabli pour l\u2019enc\u00e9phalomy\u00e9lite myalgique, il existe cependant de nombreux moyens de venir en aide aux malades qui ont re\u00e7u ce diagnostic.<\/p>\n

Assistance et encouragement dans la gestion efficace du repos et du rythme des activit\u00e9s (\u00ab pacing \u00bb) ; traitement des principaux sympt\u00f4mes et des conditions comorbides ; appui aux d\u00e9marches reli\u00e9es aux demandes d\u2019accommodement et aux programmes d\u2019assistance invalidit\u00e9 : voil\u00e0 des moyens d\u2019am\u00e9liorer grandement leur niveau fonctionnel et leur qualit\u00e9 de vie<\/p>\n

[\/et_pb_text][et_pb_divider color=”#e2e2e2″ _builder_version=”4.27.3″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][et_pb_text module_id=”what” _builder_version=”4.27.3″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″]<\/p>\n

Qu\u2019est-ce l\u2019enc\u00e9phalomy\u00e9lite myalgique ?<\/h2>\n

L\u2019enc\u00e9phalomy\u00e9lite myalgique, qu\u2019on appelait auparavant \u00ab syndrome de fatigue chronique \u00bb et que l\u2019on d\u00e9signe souvent encore par l\u2019abr\u00e9viation EM\/SFC, est une maladie chronique complexe et multisyst\u00e9mique aux effets d\u00e9vastateurs. Elle peut se pr\u00e9senter \u00e0 l\u2019enfance, \u00e0 l\u2019adolescence ou \u00e0 l\u2019\u00e2ge adulte. <\/p>\n

Il est clairement admis que c\u2019est une maladie gravement invalidante, qui prend ses racines dans des dysfonctionnements qui affectent, parmi beaucoup d\u2019autres, la production de l\u2019\u00e9nergie, le syst\u00e8me immunitaire et le syst\u00e8me nerveux.<\/p>\n

L\u2019apparition de l\u2019EM est souvent soudaine, mais elle peut aussi se d\u00e9velopper progressivement, g\u00e9n\u00e9ralement \u00e0 la suite d\u2019une infection virale ou d\u2019un autre type d\u2019infection. Le virus SARS-CoV-2 (connu sous le nom de COVID-19) en est l\u2019exemple le plus r\u00e9cent. Jusqu\u2019\u00e0 30 % des cas de COVID aigu\u00ebs se transforment en COVID longue ou PASC (s\u00e9quelles post-aigu\u00ebs de COVID-19), et 50 \u00e0 60 % d\u2019entre elles se transforment en EM. <\/p>\n

Son apparition est souvent subite, mais elle peut aussi se d\u00e9velopper graduellement, en g\u00e9n\u00e9ral \u00e0 la suite d\u2019une infection virale ou autre. Le virus SARS-CoV-2 (connu sous le nom de COVID-19) est l\u2019exemple le plus r\u00e9cent de ce type de survenue : jusqu\u2019\u00e0 30 % des cas de COVID grave ont d\u00e9bouch\u00e9 sur un syndrome post-COVID-19 (ou COVID-19 de longue dur\u00e9e), 50 % desquels se sont ensuite transform\u00e9s en enc\u00e9phalomy\u00e9lite myalgique. <\/p>\n

Les patients pr\u00e9sentent \u00e9galement toute une s\u00e9rie de sympt\u00f4mes, notamment des sympt\u00f4mes chroniques et s\u00e9v\u00e8res ressemblant \u00e0 ceux de la grippe, tels que des ganglions lymphatiques sensibles ou gonfl\u00e9s, de la fi\u00e8vre, des maux de t\u00eate, des maux de gorge, ainsi que des douleurs chroniques, des sympt\u00f4mes gastro-intestinaux, une sensibilit\u00e9 au son et \u00e0 la lumi\u00e8re.<\/p>\n

Bien que toute maladie puisse coexister avec l\u2019EM, il existe plusieurs comorbidit\u00e9s communes qu\u2019il convient de conna\u00eetre. Il s\u2019agit notamment de la fibromyalgie, du syndrome de tachycardie orthostatique posturale (POTS), de la dysautonomie, du syndrome d\u2019activation mastocytaire (MCAS), des Syndromes d\u2019Ehlers-Danlos (SED) ou SED hypermobile (SEDh), du SIBO, de la gastropar\u00e9sie et du syndrome du c\u00f4lon irritable. <\/p>\n

Les malades trouvent difficile, voire impossible, de reprendre leur fonctionnement ant\u00e9rieur et ce, m\u00eame pour les activit\u00e9s du quotidien (par exemple prendre une douche, pr\u00e9parer un repas). La gravit\u00e9 de l\u2019enc\u00e9phalomy\u00e9lite myalgique varie beaucoup ; pr\u00e8s d\u2019un quart des malades ne peuvent quitter la maison ou le lit pendant un certain temps (beaucoup, ind\u00e9finiment) et pr\u00e8s des trois quarts sont incapables de travailler. <\/p>\n

Le diagnostic se pose \u00e0 partir d\u2019un de plusieurs crit\u00e8res accept\u00e9s. Conform\u00e9ment aux recommandations des National Institutes of Health (\u00c9tats-Unis) et aux meilleures pratiques internationales, notre R\u00e9seau suit les d\u00e9finitions du document Crit\u00e8res du Consensus canadien Canadian Consensus Criteria (CCC) et de l\u2019IOM (maintenant National Academy of Medicine)
Enc\u00e9pha <\/span>Canadian Consensus Criteria (CCC)<\/a> <\/span>et le <\/span>IOM (now Academy of Medicine)<\/a> <\/span>d\u00e9finitions.<\/p>\n

[\/et_pb_text][et_pb_divider color=”#e2e2e2″ _builder_version=”4.27.3″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][et_pb_text module_id=”ME” _builder_version=”4.27.4″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″]<\/p>\n

Enc\u00e9phalomy\u00e9lite myalgique \u2013 Diagnostic et prise en charge<\/h2>\n

ME Diagnosis and Management<\/strong><\/p>\n

\n
• (Traduction) Clinique Mayo \u2013\u00a0<\/span><\/em>Diagnostic et prise en charge de l\u2019enc\u00e9phalomy\u00e9lite myalgique<\/a>\u00a0<\/span>(Mayo Clinic Proceedings \u2013\u00a0<\/span>Diagnosis and Management of ME<\/a>\u00a0<\/span>2023)<\/em><\/li>\n<\/ul>\n

  Recommandations du Consensus (2021)<\/strong><\/p>\n

  \n
  • \u00c9l\u00e9ments essentiels de diagnostic et de prise en charge<\/em>\u00a0<\/span>(Mayo Clinic Proceedings \u2013 Essentials of Diagnosis and Management 2021)<\/a><\/li>\n<\/ul>\n

    Crit\u00e8res de l\u2019IOM (maintenant National Academy of Medicine) (2015)<\/strong><\/p>\n

    \n
    • Crit\u00e8res de diagnostic de l\u2019IOM (NAM)\u00a0<\/span><\/em>(IOM [NAM] Diagnostic Criteria<\/a>)<\/u><\/li>\n
    • Feuillets publi\u00e9s par les CDC pour le personnel de soin<\/em>\u00a0<\/span>(CDC Handouts for Healthcare Providers<\/a>)<\/u><\/li>\n
    • Guide de l\u2019IOM pour la pratique clinique<\/em>\u00a0<\/span>(IOM Clinicians Guide<\/a>)<\/u><\/li>\n<\/ul>\n
      <\/ul>\n

      Crit\u00e8res du consensus canadien (2003)<\/strong><\/p>\n

      \n
      • D\u00e9finition clinique et lignes directrices \u00e0 l\u2019intention des m\u00e9decins<\/u> <\/em>(<\/u>A Clinical Case Definition and Guideline for Medical Practitioners)<\/a><\/li>\n<\/ul>\n

        Ressources de la Coalition am\u00e9ricaine de la pratique clinique concernant l\u2019EM\/SFC<\/strong><\/p>\n

        \n
        • Coalition am\u00e9ricaine de la pratique clinique pour l\u2019EM\/SFC \u2013 Diagnostiquer l\u2019EM\/SFC chez les personnes atteintes de COVID-19 de longue dur\u00e9e<\/em>\u00a0<\/span>(<\/span>S. ME\/CFS Clinician Coalition \u2013 Diagnosing ME\/CFS in People with Long COVID<\/a>)<\/span><\/a><\/li>\n
        • Coalition am\u00e9ricaine de la pratique clinique pour l\u2019EM\/SFC \u2013 Recommandations relatives aux examens<\/em>\u00a0<\/span>(S. ME\/CFS Clinician Coalition \u2013 Testing Recommendations<\/a>)<\/li>\n
        • Coalition am\u00e9ricaine de la pratique clinique pour l\u2019EM\/SFC \u2013 Recommandations relatives au traitement\u00a0<\/span><\/em>(S. ME\/CFS Clinician Coalition \u2013 Treatment Recommendations<\/a>)<\/li>\n
        • Coalition am\u00e9ricaine de la pratique clinique pour l\u2019EM\/SFC \u2013 Site internet (section de la prise en charge clinique)\u00a0<\/span><\/em>S.\u00a0ME\/CFS Clinician Coalition \u2013 Website (Clinical Management Section)<\/a><\/li>\n<\/ul>\n

          Webinars<\/strong><\/p>\n

          <\/strong><\/p>\n

          \n
          • Expos\u00e9 de la D^{re<\/sup>\u00a0<\/span>Muirhead sur le diagnostic et la prise en charge de l\u2019enc\u00e9phalomy\u00e9lite myalgique (organis\u00e9 par l\u2019IALA des IRSC)\u00a0<\/span><\/em>(}\u00a0<\/span>Muirhead on ME diagnosis and management [hosted by CIHR-IMHA])<\/a><\/li>\n
          • Entretien avec les D^{r<\/sup>\u00a0<\/span>Bateman, Dre<\/sup>\u00a0<\/span>Muirhead, Dr\u00a0<\/sup>Nacul et Mme\u00a0Robertson sur le diagnostic et la prise en charge de l\u2019enc\u00e9phalomy\u00e9lite myalgique<\/em>\u00a0<\/span>(}\u00a0<\/span>Muirhead on ME diagnosis and management [hosted by CIHR-IMHA]<\/a>)<\/li>\n
          • Expos\u00e9 du D^{r<\/sup>\u00a0<\/span>Yellman sur la d\u00e9finition du malaise apr\u00e8s effort (vid\u00e9o)\u00a0<\/span><\/em>(}\u00a0<\/span>Yellman on What is Post Exertional Malaise [Video]<\/a>)<\/li>\n
          • Expos\u00e9 du D^{r<\/sup>\u00a0<\/span>Yellman sur la d\u00e9finition du malaise apr\u00e8s effort (diapositives de l<\/em>\u2018expos\u00e9)\u00a0<\/span><\/em>(}\u00a0<\/span>Yellman on What is Post Exertional Malaise [Presentation Slides])<\/a><\/li>\n
          • Dialogues au sujet de l\u2019EM\/SFC \u2013 comprendre le malaise apr\u00e8s effort<\/em>\u00a0<\/span>(Dialogues for MECFS \u2013 Understanding Post Exertional Malaise [PEM]<\/a>)\n

            UNREST\u2014 Documentaire sur le non-repos<\/em>\u00a0(YouTube)\u00a0<\/span>(Unrest Documentary on YouTube)<\/a><\/li>\n<\/ul>\n

            [\/et_pb_text][et_pb_divider color=”#e2e2e2″ _builder_version=”4.27.3″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][et_pb_text module_id=”understanding” _builder_version=”4.27.3″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″]<\/p>\n

            Ressources concernant le rythme des activit\u00e9s<\/h2>\n

            Guides sur la gestion et le rythme des activit\u00e9s<\/strong><\/p>\n

            <\/strong><\/p>\n

            \n
            • Guide sur la gestion et le rythme des activit\u00e9s (\u00ab pacing \u00bb) dans les cas d\u2019EM\/SFC et de COVID-19 de longue dur\u00e9e (recherche collaborative sous la direction de MEAction et de malades)<\/em>\u00a0<\/span>(<\/span>Pacing and Management Guide for MECFS and Long COVID [MEAction and Patient-Led Research Collaborative])<\/a><\/a><\/li>\n
            • Guide sur la gestion et le rythme des activit\u00e9s (\u00ab\u00a0pacing\u00a0\u00bb) pour l\u2019EM\/SFC (MEAction)\u00a0<\/span><\/em>(Pacing and Management Guide for MECFS [MEAction])<\/a><\/li>\n
            • Guide sur la gestion et le rythme des activit\u00e9s (\u00ab\u00a0pacing\u00a0\u00bb) dans les cas p\u00e9diatriques d\u2019EM\/SFC et de COVID-19 de longue dur\u00e9e (MEAction et famille de malades souffrant de COVID-19 de longue dur\u00e9e)<\/em>\u00a0<\/span>(Pediatric Pacing and Management Guide for ME\/CFS and Long COVID [MEAction and Long COVID Families])<\/a><\/li>\n
            • Comment survivre \u00e0 l\u2019\u00e9pisode asth\u00e9nique (\u00ab\u00a0crash\u00a0\u00bb) (Bateman Horne Center)<\/em>\u00a0<\/span>(Crash Survival Guide [Bateman Horne Center])<\/a><\/li>\n<\/ul>\n

              [\/et_pb_text][et_pb_divider color=”#e2e2e2″ _builder_version=”4.27.3″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][et_pb_text module_id=”common” _builder_version=”4.27.4″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″]<\/p>\n

              Conditions comorbides fr\u00e9quentes \u2013 Diagnostic et prise en charge<\/h2>\n

              Intol\u00e9rance orthostatique<\/strong><\/p>\n

              \n
              • Informations g\u00e9n\u00e9rales concernant l\u2019intol\u00e9rance orthostatique<\/em>\u00a0<\/span>General Information on Orthostatic Intolerance (OI)<\/a><\/a><\/li>\n<\/ul>\n

                Syndrome de tachycardie orthostatique posturale (STOP)<\/strong><\/p>\n

                \n
                • Bateman Horne Center \u2013 Test d\u2019inclinaison de 10 minutes de la NASA (<\/em>Bateman Horne Center \u2013 10 Minute NASA Lean Test<\/a>)<\/li>\n<\/ul>\n

                  Syndrome d\u2019activation mastocytaire (SAMA)<\/strong><\/p>\n

                  \n
                  • Bateman Horne Center \u2013 Expos\u00e9 sur le syndrome d\u2019activation mastocytaire (SAMA) (vid\u00e9o)<\/em>\u00a0<\/span>Bateman Horne Center \u2013 Presentation on MCAS [Video])<\/a><\/li>\n
                  • Bateman Horne Center \u2013 Expos\u00e9 sur le syndrome d\u2019activation mastocytaire (SAMA) (diapositives) (<\/em>Bateman Horne Center \u2013 Presentation on MCAS [slides])<\/a><\/li>\n
                  • Guide d\u2019examen complet pour le diagnostic du SAMA<\/em>\u00a0<\/span>(Guide for MCAS Diagnostic Workup<\/a>)<\/li>\n<\/ul>\n

                    Syndrome d\u2019Ehlers-Danlos et de l\u2019hypermobilit\u00e9<\/strong><\/p>\n

                    (Ressources \u00e0 venir)<\/em><\/p>\n

                    <\/ul>\n
                    <\/ul>\n

                    [\/et_pb_text][et_pb_divider color=”#e2e2e2″ _builder_version=”4.27.3″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][et_pb_text module_id=”understanding” _builder_version=”4.27.3″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″]<\/p>\n

                    Consid\u00e9rations particuli\u00e8res<\/h2>\n

                    Consid\u00e9rations particuli\u00e8res<\/strong><\/p>\n

                    <\/strong><\/p>\n

                    \n
                    • Consid\u00e9rations relatives aux soins en clinique d\u2019urgence ou sans rendez-vous (Bateman Horne Center)<\/em>\u00a0<\/span>(Emergency or Urgent Care Considerations [Bateman Horne Center])<\/a><\/li>\n
                    • Pr\u00e9paration en vue d\u2019une op\u00e9ration chirurgicale (article de revue scientifique)<\/em>\u00a0<\/span>(Preparing for Surgery [Publication])<\/a><\/li>\n<\/ul>\n
                      <\/ul>\n

                      [\/et_pb_text][et_pb_text module_id=”proches” _builder_version=”4.27.4″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” hover_enabled=”0″ global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″ sticky_enabled=”0″]<\/p>\n

                      Ressources pour les proches et les activistes<\/h2>\n

                      \n
                      • Bateman Horne Center \u2013 Croire les proches (<\/em>Bateman Horne Center \u2013 Believing the Loved One<\/a>)<\/u><\/li>\n
                      • Bateman Horne Center \u2013 Lettre \u00e0 quelqu\u2019un qui prend soin de moi (quelques consid\u00e9rations sur ma maladie chronique) (<\/em>Bateman Horne Center \u2013 Caregiver Letter [Insights into My Chronic Illness])<\/a><\/li>\n<\/ul>\n

                        [\/et_pb_text][et_pb_divider color=”#e2e2e2″ _builder_version=”4.27.3″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][et_pb_text module_id=”prepare” _builder_version=”4.27.4″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” hover_enabled=”0″ global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″ sticky_enabled=”0″]<\/p>\n

                        Se pr\u00e9parer pour votre examen<\/h2>\n

                        Ressources en vue des consultations<\/strong><\/p>\n

                        <\/strong><\/p>\n

                        <\/strong><\/p>\n

                        \n
                        • Comment communiquer avec votre prestataire de soins (Bateman Horne Center)<\/em>\u00a0<\/span>(How to Communicate With Your Provider [Bateman Horne Center])<\/a><\/li>\n
                        • Questionnaire bonne journ\u00e9e\/mauvaise journ\u00e9e (Bateman Horne Center)<\/em>\u00a0<\/span>(Good Day\/Bad Day Questionnaire [Bateman Horne Center])<\/a><\/li>\n
                        • Fiche d\u2019\u00e9valuation de l\u2019\u00e9tat de sant\u00e9 (Bateman Horne Center)<\/em>\u00a0<\/span>(Health Assessment Worksheet [Bateman Horne Center])<\/a><\/li>\n<\/ul>\n

                          [\/et_pb_text][et_pb_divider color=”#e2e2e2″ _builder_version=”4.27.3″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_divider][et_pb_text module_id=”demande” _builder_version=”4.27.4″ _module_preset=”default” link_text_color=”gcid-secondary-color” header_2_font=”Merriweather||||||||” header_2_text_color=”#000000″ header_2_font_size=”34px” custom_margin=”2vw||||false|false” hover_enabled=”0″ global_colors_info=”{%22gcid-secondary-color%22:%91%22link_text_color%22%93,%22gcid-81f9ad88-9858-401f-a912-9ef6823933cf%22:%91%22link_text_color__hover%22%93}” link_text_color__hover_enabled=”on|hover” link_text_color__hover=”#247a62″ sticky_enabled=”0″]<\/p>\n

                          D\u00e9marches reli\u00e9es aux demandes d\u2019accommodement et aux programmes d\u2019assistance invalidit\u00e9<\/h2>\n

                          D\u00e9marches reli\u00e9es aux demandes d\u2019accommodement et aux programmes d\u2019assistance invalidit\u00e9<\/strong><\/p>\n

                          <\/strong><\/p>\n

                          <\/strong><\/p>\n

                          \n
                          • Information sur l\u2019EM\/SFC \u00e0 l\u2019intention des prestataires de soins de sant\u00e9 (Bateman Horne Center)\u00a0<\/span><\/em>(Information about MECFS for Healthcare Providers [Bateman Horne Center])<\/a><\/li>\n
                          • Documenter l\u2019invalidit\u00e9 caus\u00e9e par l\u2019enc\u00e9phalomy\u00e9lite myalgique (article de revue scientifique)\u00a0<\/span><\/em>(<\/span>Documenting Disability in ME Publication])<\/a><\/li>\n<\/ul>\n

                            [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

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                            1. \n\t\t\t\t\t\t\t\t\t\t\t\t\t \n\t\t\t\t\t\t\t\t\t\t\t\t\t \tHome<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t <\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t \n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<\/ol>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>RESOURCESRessources pour les patients Cette section vise \u00e0 fournir aux malades un acc\u00e8s rapide et commode \u00e0 plus d\u2019informations sur les points suivants : diagnostic et prise en charge de l\u2019enc\u00e9phalomy\u00e9lite myalgique ; diagnostic et prise en charge des conditions comorbides ;\u2026 Read More »<\/a><\/p>\n","protected":false},"author":68,"featured_media":0,"parent":1561,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-1703","page","type-page","status-publish","hentry"],"yoast_head":"\n