{"id":26692,"date":"2020-07-29T21:32:28","date_gmt":"2020-07-29T21:32:28","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=26692"},"modified":"2020-07-29T21:32:28","modified_gmt":"2020-07-29T21:32:28","slug":"what-me-cfs-caregivers-want-you-to-know","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/what-me-cfs-caregivers-want-you-to-know\/","title":{"rendered":"What ME\/CFS caregivers want you to know"},"content":{"rendered":"<h3><a href=\"https:\/\/content.iospress.com\/articles\/work\/wor203171\" target=\"_blank\" rel=\"noopener noreferrer\">What ME\/CFS caregivers want you to know<\/a>, by Bobbie Ausubel <span style=\"text-decoration: underline;\">in<\/span>\u00a0<em>Work vol. 66, no. 2, pp. 361-364, <\/em>2020 July 20 [<span class=\"generated\">DOI:\u00a0<\/span>10.3233\/WOR-203171]<\/h3>\n<p>&nbsp;<\/p>\n<p><strong>Eight stories comprise this paper: <\/strong><\/p>\n<p>Stories were written in 2019 from caregivers, parents, and spouses, most of whom live with a pwME (person with ME). To protect those in our care, some authors have not used their full names.<\/p>\n<p><img data-recalc-dims=\"1\" decoding=\"async\" class=\"alignright size-full wp-image-27327 lazyload\" data-src=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/07\/2-hands.jpg?resize=186%2C520&#038;ssl=1\" alt=\"\" width=\"186\" height=\"520\" data-srcset=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/07\/2-hands.jpg?w=186&amp;ssl=1 186w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/07\/2-hands.jpg?resize=107%2C300&amp;ssl=1 107w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/07\/2-hands.jpg?resize=54%2C150&amp;ssl=1 54w\" data-sizes=\"(max-width: 186px) 100vw, 186px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 186px; --smush-placeholder-aspect-ratio: 186\/520;\" \/>Each patient suffers from Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome (ME\/CFS), a neuro-immune disease which affects each person differently, with a great variety of symptoms and a wide spectrum of disease burden. The National Academy of Medicine says ME\/CFS is three times more common in women than men (1), and they estimate that 80% of patients have not yet received a diagnosis (2).<\/p>\n<p>Through their experiences caring for loved ones with ME\/CFS, these caregivers have anecdotes and requests for future doctors and occupational therapists to assist with servicing their suffering pwMEs.<\/p>\n<ul>\n<li><i>J., Mother and at-home caregiver of a pwME<\/i><\/li>\n<li><i>Courtney Miller, at-home caregiver and wife of Robert Miller, an ME\/CFS patient of 30 years<\/i><\/li>\n<li><i>Elizabeth B. Burlingame, mother and at-home caregiver of a pwME<\/i><\/li>\n<li><i>Katy C., mother of a pwME<\/i><\/li>\n<li><i>Bev., mother of a pwME<\/i><\/li>\n<li><i>Martin W., father of a pwME<\/i><\/li>\n<li><i>B., mother of a pwME<\/i><\/li>\n<li><i>M<\/i>\u2019<i>Liz C., friend of two pwME<\/i><\/li>\n<\/ul>\n<p><a href=\"https:\/\/content.iospress.com\/articles\/work\/wor203171\" target=\"_blank\" rel=\"noopener noreferrer\">Read the stories<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>What ME\/CFS caregivers want you to know, by Bobbie Ausubel in\u00a0Work vol. 66, no. 2, pp. 361-364, 2020 July 20 [DOI:\u00a010.3233\/WOR-203171] &nbsp; Eight stories comprise this paper: Stories were written in 2019 from caregivers, parents, and spouses, most of whom &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/what-me-cfs-caregivers-want-you-to-know\/\">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":[6104,6105,153],"class_list":["post-26692","post","type-post","status-publish","format-standard","hentry","category-news","tag-bobbie-ausubel","tag-caregiver","tag-carers"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-6Ww","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/26692","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=26692"}],"version-history":[{"count":5,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/26692\/revisions"}],"predecessor-version":[{"id":27345,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/26692\/revisions\/27345"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=26692"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=26692"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=26692"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}