{"id":2565,"date":"2025-04-15T03:25:00","date_gmt":"2025-04-15T03:25:00","guid":{"rendered":"https:\/\/here-and-now-app.de\/?p=2565"},"modified":"2025-04-30T17:01:15","modified_gmt":"2025-04-30T17:01:15","slug":"me-cfs-ler-mussen-ihre-krankheit-standig-beweisen","status":"publish","type":"post","link":"https:\/\/here-and-now-app.de\/en\/me-cfs-ler-mussen-ihre-krankheit-standig-beweisen\/","title":{"rendered":"ME\/CFS sufferers must constantly prove their illness"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"2565\" class=\"elementor elementor-2565\" data-elementor-post-type=\"post\">\n\t\t\t\t<div class=\"elementor-element elementor-element-6eb9d588 e-flex e-con-boxed e-con e-parent\" data-id=\"6eb9d588\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-35c5d40a elementor-widget elementor-widget-image\" data-id=\"35c5d40a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"560\" src=\"https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001.jpg\" class=\"attachment-large size-large wp-image-2739\" alt=\"\" srcset=\"https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001.jpg 2560w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-300x164.jpg 300w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-1024x560.jpg 1024w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-768x420.jpg 768w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-1536x840.jpg 1536w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-2048x1120.jpg 2048w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-18x10.jpg 18w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-24x13.jpg 24w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-36x20.jpg 36w, https:\/\/here-and-now-app.de\/wp-content\/uploads\/2025\/05\/AlleMude_EN_V001-48x26.jpg 48w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-2101be8d e-con-full e-flex e-con e-child\" data-id=\"2101be8d\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-ff5a591 hfe-post-info-layout-inline elementor-widget elementor-widget-post-info-widget\" data-id=\"ff5a591\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"post-info-widget.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul class=\"hfe-post-info-inline hfe-post-info-items hfe-post-info\">\n\t\t\t\t\t<li class=\"hfe-post-info-item elementor-repeater-item-bf4f122 hfe-post-info-inline-item\" itemprop=\"about\"> \n\t\t\t\n\t\t\t\t\t\t<span class=\"hfe-post-info-icon\">\n\t\t\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-tags\" viewbox=\"0 0 640 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M497.941 225.941L286.059 14.059A48 48 0 0 0 252.118 0H48C21.49 0 0 21.49 0 48v204.118a48 48 0 0 0 14.059 33.941l211.882 211.882c18.744 18.745 49.136 18.746 67.882 0l204.118-204.118c18.745-18.745 18.745-49.137 0-67.882zM112 160c-26.51 0-48-21.49-48-48s21.49-48 48-48 48 21.49 48 48-21.49 48-48 48zm513.941 133.823L421.823 497.941c-18.745 18.745-49.137 18.745-67.882 0l-.36-.36L527.64 323.522c16.999-16.999 26.36-39.6 26.36-63.64s-9.362-46.641-26.36-63.64L331.397 0h48.721a48 48 0 0 1 33.941 14.059l211.882 211.882c18.745 18.745 18.745 49.137 0 67.882z\"><\/path><\/svg>\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t<span class=\"hfe-post-info-text hfe-post-info__item hfe-post-info__item--type-terms\">\n\t\t\t\n\t\t\t\t\t\t\t<span class=\"hfe-post-info__terms-list\">\n\t\t\t\t\t<span class=\"hfe-post-info__terms-list-item\">Study<\/span>\t\t\t\t<\/span>\n\t\t\t\t\t<\/span>\n\t\t\n\t\t\t\t\t<\/li>\n\t\t\t\t<li class=\"hfe-post-info-item elementor-repeater-item-463e9e5 hfe-post-info-inline-item\" itemprop=\"datePublished\"> \n\t\t\t\n\t\t\t\t\t\t<span class=\"hfe-post-info-icon\">\n\t\t\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-far-calendar-alt\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M148 288h-40c-6.6 0-12-5.4-12-12v-40c0-6.6 5.4-12 12-12h40c6.6 0 12 5.4 12 12v40c0 6.6-5.4 12-12 12zm108-12v-40c0-6.6-5.4-12-12-12h-40c-6.6 0-12 5.4-12 12v40c0 6.6 5.4 12 12 12h40c6.6 0 12-5.4 12-12zm96 0v-40c0-6.6-5.4-12-12-12h-40c-6.6 0-12 5.4-12 12v40c0 6.6 5.4 12 12 12h40c6.6 0 12-5.4 12-12zm-96 96v-40c0-6.6-5.4-12-12-12h-40c-6.6 0-12 5.4-12 12v40c0 6.6 5.4 12 12 12h40c6.6 0 12-5.4 12-12zm-96 0v-40c0-6.6-5.4-12-12-12h-40c-6.6 0-12 5.4-12 12v40c0 6.6 5.4 12 12 12h40c6.6 0 12-5.4 12-12zm192 0v-40c0-6.6-5.4-12-12-12h-40c-6.6 0-12 5.4-12 12v40c0 6.6 5.4 12 12 12h40c6.6 0 12-5.4 12-12zm96-260v352c0 26.5-21.5 48-48 48H48c-26.5 0-48-21.5-48-48V112c0-26.5 21.5-48 48-48h48V12c0-6.6 5.4-12 12-12h40c6.6 0 12 5.4 12 12v52h128V12c0-6.6 5.4-12 12-12h40c6.6 0 12 5.4 12 12v52h48c26.5 0 48 21.5 48 48zm-48 346V160H48v298c0 3.3 2.7 6 6 6h340c3.3 0 6-2.7 6-6z\"><\/path><\/svg>\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t<span class=\"hfe-post-info-text hfe-post-info__item hfe-post-info__item--type-date\">\n\t\t\t\n\t\t\t\t\t\t\tApril 15, 2025\t\t\t\t\t<\/span>\n\t\t\n\t\t\t\t\t<\/li>\n\t\t\t\t<\/ul>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-26dee8b2 elementor-widget elementor-widget-heading\" data-id=\"26dee8b2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">ME\/CFS sufferers must constantly prove that their illness is \u201creal\u201d<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5db69928 elementor-widget elementor-widget-text-editor\" data-id=\"5db69928\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><strong>New study shows: ME\/CFS patients feel under pressure to prove that their illness is real<\/strong><\/p><p>When your body goes on strike, your strength fails and even the simplest everyday tasks become impossible \u2013 but those around you can't see anything wrong with you. Instead of sympathy, you are met with skepticism everywhere you turn.<\/p><p>Then, of course, you start to ask yourself: Maybe it's 'just psychological' after all. Am I just imagining my exhaustion? <em>Maybe it's 'just psychological' after all. Maybe you should just pull yourself together? Should you follow the advice and just \u201cexercise a little more every day\u201d?<\/em><\/p><p>It is precisely this spiral of physical suffering and lack of recognition that has accompanied people with ME\/CFS for many years \u2013 and, since the pandemic, many with Long Covid as well. A new study by the University of Surrey now makes it clear that the emotional strain caused by disbelief, pressure to justify oneself, and medical uncertainty is enormous.<\/p><p>Saara Petker, clinical psychologist, co-author of the study, and former doctoral student at the University of Surrey, writes:<\/p><p><em>\"We found that our participants live in constant uncertainty and struggle to find treatment. They told us that they don't feel heard, and some said that all these experiences have caused them to lose trust in doctors, their social environment, and even their own bodies.<\/em><\/p><p><em>Medical advice is important\u2014but psychological support must be offered with caution. If it is seen as a substitute for medical help, it can be off-putting.\"<\/em><\/p><p>This means that if my doctor sends me straight to a psychologist before seriously examining my physical symptoms, before even seriously addressing the issue of ME\/CFS, then this creates exactly the feeling that many ME\/CFS and Long Covid sufferers know so well: that their symptoms are not \u201creal,\u201d but imagined, exaggerated, or even self-induced.<br \/>What is intended as an offer of help quickly comes across as an unspoken judgment: \u201cThere's nothing wrong with you. It's all in your head. You're being hysterical. It's probably your hormones.\u201d<\/p><p>There is a world of difference between receiving psychological support as a supplement and it being the only \u2018answer\u2019 to a serious physical illness.<br \/>Especially in the case of chronic invisible illnesses such as ME\/CFS or Long Covid, it is essential that medical help is not replaced by psychological support, but rather supplemented by it.<\/p><p>Only then can those affected feel safe \u2013 and not like suspects in their own bodies.<\/p><p>A central theme among many study participants was the fear that psychological support would be interpreted as an indication that the symptoms were \u201cjust imagined.\u201d This concern means that many patients do not seek urgently needed help for fear of not being taken seriously again.<\/p><p><em>\u201cThe problem is not that patients reject psychological help \u2013 they long to be taken seriously. But when medical help is replaced by psychological services, this can be perceived as devaluing.\u201d<\/em><\/p><p>\u2013 Prof. Jane Ogden, health psychologist<\/p><p>ME\/CFS is a disease that usually remains invisible.<\/p><p>Die Symptome \u2013 extreme Ersch\u00f6pfung, Schmerzen, Brainfog, Kreislaufprobleme \u2013 sind oft schwer objektiv messbar. Und genau das macht es so schwer, Verst\u00e4ndnis und Unterst\u00fctzung zu bekommen.<\/p><p>The symptoms\u2014extreme exhaustion, pain, brain fog, circulatory problems\u2014are often difficult to measure objectively. And that is precisely what makes it so difficult to gain understanding and support. In a world where \u201cvisibly ill\u201d is often equated with \u201creally ill,\u201d ME\/CFS sufferers face a double burden: Not only do they struggle with a devastating condition, but they also have to constantly explain, justify, and prove themselves.<\/p><p>So what can family members, doctors, and fellow human beings do?<br \/>Sometimes it's very simple \u2013 and at the same time enormously effective:<\/p><p><strong>Listen and believe<\/strong><\/p><p><strong>Take the reports of those affected seriously \u2013 even (and especially) if you cannot see the symptoms.<\/strong><br \/>You don't need medical expertise to show empathy. An honest \u201cI believe you\u201d can heal more than many therapy suggestions. And it can prevent what many patients describe as the most painful thing: the feeling of being alone with everything, of constantly having to justify and prove themselves.<\/p><p><strong>Combine medical and psychological help<\/strong><\/p><p>Psychological support should be offered in addition to medical treatment \u2013 not as a substitute.<\/p><p><strong>Promote education<\/strong><\/p><p>The more people know about ME\/CFS and Long Covid, the greater the understanding and support.<\/p><p>It is time that we as a society learn to see the invisible and treat those affected with empathy and respect. This does not require medical training, just a little compassion.<\/p><p>And even if you have no idea about the illness, you can admit this openly and say:<br \/><strong>\u201cThat sounds really awful, what you're describing. I believe you. What can I do to support you?\u201d<\/strong><\/p><p><em>Quelle: <\/em><a href=\"https:\/\/www.surrey.ac.uk\/news\/study-finds-long-covid-patients-feel-pressure-prove-their-illness-real\" target=\"_blank\" rel=\"noopener\"><em>University of Surrey \u2013 Studie \u00fcber Long Covid und das Gef\u00fchl, die Krankheit beweisen zu m\u00fcssen<\/em><\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>When your body goes on strike, your strength fails and even the simplest everyday tasks become impossible \u2013 but those around you can't see anything wrong with you. Instead of sympathy, you are met with skepticism everywhere you turn.<\/p>","protected":false},"author":1,"featured_media":2739,"comment_status":"open","ping_status":"open","sticky":false,"template":"elementor_header_footer","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"disabled","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[17],"tags":[],"class_list":["post-2565","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-studie"],"_links":{"self":[{"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/posts\/2565","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/comments?post=2565"}],"version-history":[{"count":58,"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/posts\/2565\/revisions"}],"predecessor-version":[{"id":3376,"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/posts\/2565\/revisions\/3376"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/media\/2739"}],"wp:attachment":[{"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/media?parent=2565"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/categories?post=2565"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/here-and-now-app.de\/en\/wp-json\/wp\/v2\/tags?post=2565"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}