{"id":20786,"date":"2019-05-06T06:56:04","date_gmt":"2019-05-06T06:56:04","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=20786"},"modified":"2019-05-13T06:53:43","modified_gmt":"2019-05-13T06:53:43","slug":"me-a-global-health-scandal-stop-ignoring-me-video-me-awareness-week-2019","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/me-a-global-health-scandal-stop-ignoring-me-video-me-awareness-week-2019\/","title":{"rendered":"ME: a global health scandal &#8211; Stop ignoring ME video &#8211; ME Awareness week 2019"},"content":{"rendered":"<h2 style=\"text-align: center;\"><strong><span style=\"color: #993300;\">ME: a global health scandal<\/span><\/strong><\/h2>\n<h3 style=\"text-align: center;\">People with ME are not asking for special treatment.<\/h3>\n<h3 style=\"text-align: center;\">We are asking for humane treatment and health equality.<\/h3>\n<p style=\"text-align: center;\">ME Awareness week 6th &#8211; 12th May 2019<\/p>\n<p><iframe data-src=\"https:\/\/www.youtube.com\/embed\/_SinqgOv4aI\" width=\"731\" height=\"411\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" class=\"lazyload\" data-load-mode=\"1\"><\/iframe><\/p>\n<p><a href=\"https:\/\/www.youtube.com\/watch?v=_SinqgOv4aI\" target=\"_blank\" rel=\"noopener noreferrer\">Produced by Broken Battery, 2 May 2019<\/a><\/p>\n<h2><strong>ME is one of the most misunderstood diseases.<\/strong><\/h2>\n<p>1 in 5 parents face child protection proceedings, patients have been sectioned and abused, NHS treatments make over 50% of patients worse, biomedical research has been pitiful. A global health scandal that has been ignored for over 30 years.<\/p>\n<h3><span style=\"color: #692212;\"><strong>Low quality of life<\/strong><\/span><\/h3>\n<p>ME has a lower quality of life than HIV\/AIDS, Stroke, Parkinsons, Multiple Sclerosis [1], but is one of the most misunderstood diseases. 80% of doctors think its psychosomatic [2].<\/p>\n<h3><span style=\"color: #692212;\"><strong>Child protection proceedings<\/strong><\/span><\/h3>\n<p>Misunderstanding has led to 1 in 5 parents face child protection proceedings [3]. A recent example is an April 2019 iNews article where Georgia Whyard&#8217;s teachers said she had &#8216;school phobia&#8217; despite having\u00a0 an official diagnosis of myalgic encephalomyelitis [4].<\/p>\n<h3><span style=\"color: #692212;\"><strong>Mental health sectioning<\/strong><\/span><\/h3>\n<p>Misunderstanding has led to patients being sectioned. In 2003 police forced entry into Sophia Mirza&#8217;s mother&#8217;s home, sectioned, and forced Sophia to a mental hospital. After being released Sophia had severely deteriorated and later died. An independent Neuropathologist found Sophia&#8217;s spine contained massive infection and Sophia was the first patient to have ME listed as her cause of death [5].<\/p>\n<h3><span style=\"color: #692212;\"><strong>Physical abuse<\/strong><\/span><\/h3>\n<p>Misunderstanding has led to abuse, Ean Proctor was removed from his home against his parents&#8217; wishes and hospitalized under a &#8220;Place of Safety Order.&#8221; While in the hospital his health deteriorated as he was subjected to inhumane treatments: being placed into a therapy pool to force him to use his arms to swim, although he was unable to and would sink underwater; [6]<\/p>\n<h3><span style=\"color: #692212;\"><strong>Harmful treatments<\/strong><\/span><\/h3>\n<p>Many ME\/CFS patients have been harmed by Graded Exercise\u00a0Therapy. Over 50% of patients consistently report a worsening of their condition in an analysis of 18000 patients from 10 surveys from multiple countries [7]. Many have been made permanently disabled.<\/p>\n<h3><span style=\"color: #692212;\"><strong>Fraudulent scientific research<\/strong><\/span><\/h3>\n<p>The PACE Trial has been widely discredited [8] Over 100 scientists and over 80 international charities (Nearly every one) signed an open letter asking for the trial to be independently reanalysed [9]. Former science teacher Carol Monaghan MP described PACE as &#8220;one of the greatest medical scandals of the 21st century&#8221; and said &#8220;As a scientist, I am appalled by the methods used in the trial, which included changing the parameters and success criteria midway through the study. This has been widely discredited in the research community&#8221; Over 30 MPs have signed up to the MAIMES Campaign calling for an investigation into The PACE Trial [10].<\/p>\n<h3><span style=\"color: #692212;\"><strong>Underfunded research<\/strong><\/span><\/h3>\n<p>ME receives a disproportionally small amount of UK research funding given the prevalence of the condition. Despite the disease burden, the level of research spend per ME\/CFS patient is considerably lower than in other illnesses. MS, for example, receives approximately 20 times more funding worldwide despite 2.5 times less prevalent than ME [11].\u00a0\u00a0\u00a0 <a href=\"https:\/\/www.youtube.com\/watch?v=_SinqgOv4aI\" target=\"_blank\" rel=\"noopener noreferrer\">Read references &amp; credits<\/a><\/p>\n<p style=\"text-align: center;\"><span style=\"color: #993300;\">#StopIgnoringME<\/span>\u00a0\u00a0\u00a0\u00a0 <span style=\"color: #800080;\">#TimeForUnrestWales\u00a0\u00a0\u00a0\u00a0 <\/span><span style=\"color: #ff0000;\">#HelpNHSbeMEaware<\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"color: #008000;\">#BeMEaware<\/span>\u00a0\u00a0\u00a0 <span style=\"color: #000080;\">#WAMESMECFS<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>ME: a global health scandal People with ME are not asking for special treatment. We are asking for humane treatment and health equality. ME Awareness week 6th &#8211; 12th May 2019 Produced by Broken Battery, 2 May 2019 ME is &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/me-a-global-health-scandal-stop-ignoring-me-video-me-awareness-week-2019\/\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[3747,4403,4048,5018,5019,2154],"class_list":["post-20786","post","type-post","status-publish","format-standard","hentry","category-news","tag-helpnhsbemeaware","tag-stopignoringme","tag-timeforunrestwales","tag-broken-battery-production","tag-health-equality","tag-video"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-5pg","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/20786","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=20786"}],"version-history":[{"count":5,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/20786\/revisions"}],"predecessor-version":[{"id":20889,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/20786\/revisions\/20889"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=20786"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=20786"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=20786"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}