{"id":40365,"date":"2023-08-08T07:54:21","date_gmt":"2023-08-08T06:54:21","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=40365"},"modified":"2023-08-08T07:54:21","modified_gmt":"2023-08-08T06:54:21","slug":"video-very-severe-me-cfs","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/video-very-severe-me-cfs\/","title":{"rendered":"Video: Very severe ME\/CFS"},"content":{"rendered":"<h2><strong>Video: Very severe ME\/CFS, from Broken Battery<\/strong><\/h2>\n<p>&nbsp;<\/p>\n<p>Very Severe ME\/CFS is a debilitating condition causing profound suffering and life-threatening symptoms.<\/p>\n<p><iframe title=\"Very Severe ME\/CFS\" data-src=\"https:\/\/www.youtube.com\/embed\/J9fQDXzLTNY\" width=\"640\" height=\"360\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" class=\"lazyload\" data-load-mode=\"1\"><\/iframe> <span class=\"yt-core-attributed-string--link-inherit-color\">Patients are in bed all day and dependent on care. <\/span><\/p>\n<p><span class=\"yt-core-attributed-string--link-inherit-color\">They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1]. <\/span><\/p>\n<p><span class=\"yt-core-attributed-string--link-inherit-color\">Most doctors have had no formal training; many think it\u2019s psychological and some don&#8217;t even believe in the condition. Misdiagnosis and inappropriate management are common. <\/span><\/p>\n<p><span class=\"yt-core-attributed-string--link-inherit-color\">Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3]. <\/span><\/p>\n<p><span class=\"yt-core-attributed-string--link-inherit-color\">The NICE Guideline has more information including special sections relating to Severe and Very Severe ME\/CFS [4].<\/span><\/p>\n<p>1. <a href=\"https:\/\/www.mdpi.com\/2227-9032\/9\/4\/459\" target=\"_blank\" rel=\"noopener\">https:\/\/www.mdpi.com\/2227-9032\/9\/4\/459<\/a><br \/>\n2. <a href=\"https:\/\/archive.li\/2023.02.28-221814\/https:\/\/www.thetimes.co.uk\/article\/me-patients-risk-dying-of-starvation-under-nhs-care-kkdwjbkl2\" target=\"_blank\" rel=\"noopener\">https:\/\/archive.li\/2023.02.28-221814\/&#8230;<\/a><br \/>\n3. <a href=\"https:\/\/www.codastory.com\/waronscience\/chronic-fatigue-syndrome-long-covid-unexplained-symptoms\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.codastory.com\/waronscienc&#8230;<\/a><br \/>\n4. <a href=\"https:\/\/meassociation.org.uk\/wp-content\/uploads\/NICE-Clinical-Guideline-on-MECFS-An-MEA-Summary-December-2021.pdf\" target=\"_blank\" rel=\"noopener\">https:\/\/meassociation.org.uk\/wp-conte&#8230;<\/a><\/p>\n<p><strong>#EndMalnutritionInME\u00a0 \u00a0 #SevereMEday<\/strong><\/p>\n<p><strong>Watch more videos from<\/strong> <a href=\"https:\/\/www.youtube.com\/@BrokenBattery\" target=\"_blank\" rel=\"noopener\">Broken Battery<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Video: Very severe ME\/CFS, from Broken Battery &nbsp; Very Severe ME\/CFS is a debilitating condition causing profound suffering and life-threatening symptoms. Patients are in bed all day and dependent on care. They need help with personal hygiene and eating, and &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/video-very-severe-me-cfs\/\">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":[],"class_list":["post-40365","post","type-post","status-publish","format-standard","hentry","category-news"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-av3","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/40365","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=40365"}],"version-history":[{"count":1,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/40365\/revisions"}],"predecessor-version":[{"id":40366,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/40365\/revisions\/40366"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=40365"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=40365"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=40365"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}