{"id":25083,"date":"2020-03-26T20:20:57","date_gmt":"2020-03-26T20:20:57","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=25083"},"modified":"2020-03-26T20:20:57","modified_gmt":"2020-03-26T20:20:57","slug":"me-cfs-significant-negative-impact-of-quality-of-life-of-both-patients-family-members","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/me-cfs-significant-negative-impact-of-quality-of-life-of-both-patients-family-members\/","title":{"rendered":"ME\/CFS: significant negative impact of quality of life of both patients &#038; family members"},"content":{"rendered":"<h3><strong>Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome (ME\/CFS): significant negative impact of Quality of Life of both patients and family members, <\/strong>by Esme Brittain<\/h3>\n<p>&nbsp;<\/p>\n<p><a href=\"https:\/\/wames.org.uk\/cms-english\/me-cfs-significant-negative-impact-of-quality-of-life-of-both-patients-family-members\/esme-brittain-3\/\" rel=\"attachment wp-att-25093\"><img data-recalc-dims=\"1\" decoding=\"async\" class=\"alignright wp-image-25093 size-full lazyload\" data-src=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/Esme-Brittain-3.png?resize=305%2C171&#038;ssl=1\" alt=\"\" width=\"305\" height=\"171\" data-srcset=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/Esme-Brittain-3.png?w=305&amp;ssl=1 305w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/Esme-Brittain-3.png?resize=300%2C168&amp;ssl=1 300w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/Esme-Brittain-3.png?resize=150%2C84&amp;ssl=1 150w\" data-sizes=\"(max-width: 305px) 100vw, 305px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 305px; --smush-placeholder-aspect-ratio: 305\/171;\" \/><\/a>During my 3rd year at Cardiff medical school, I conducted a 6-week research project looking at the impact of ME\/CFS on both patients\u2019 and their family members\u2019 quality of life (QoL).<\/p>\n<p><strong>Background:<\/strong><\/p>\n<p>Our study was the first to look at the impact of ME\/CFS on adult patients\u2019 quality of life and that of their family members using validated questionnaires. Some studies have explored ME\/CFS in paediatric patients and the impact on their mothers. They found that mothers experienced loss of monthly income and a marked impact on psychological health.<\/p>\n<p>In another study siblings were asked to complete questionnaires and 9 siblings partook in a semi-structured interview. In the interviews, all siblings talked about restrictions on family life e.g. less holidays, don\u2019t go out as a family as much. Some of the siblings spoke about the social stigma around ME\/CF and how they had decided not to tell some of their friends about it because they may not understand. Emotional impact was also commonly talked about.<\/p>\n<p><strong>Methodology:<\/strong><\/p>\n<p>WAMES kindly posted information about our study on their website and social media pages. 39 patients\/carers got in touch and wanted to get involved with the study, which was brilliant. We sent out a questionnaire to each patient (<a href=\"https:\/\/www.who.int\/substance_abuse\/research_tools\/en\/english_whoqol.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">WHOQOL-BREF<\/a>: World Health Organisation Quality of Life \u2013 Abbreviated version) and 4 questionnaires for their family members (<a href=\"https:\/\/www.cardiff.ac.uk\/medicine\/resources\/quality-of-life-questionnaires\/family-reported-outcome-measure\" target=\"_blank\" rel=\"noopener noreferrer\">FROM-16<\/a> \u2013 Family Reported Outcome Measures).<\/p>\n<p>We had a 74% questionnaire response rate \u2013 this enabled us to achieve a robust and beneficial study.<\/p>\n<p><strong>Results:<\/strong><\/p>\n<p><em>Patients \u2013 WHOQOL-BREF<\/em><\/p>\n<ul>\n<li>Patients scored very low in the physical health section, indicating this had a greater impact on their QoL.<\/li>\n<li>There was a strong link between how the patients reported their QoL and how satisfied they were with their health i.e. the lower their health satisfaction, the poorer their QoL<\/li>\n<\/ul>\n<p><em>Family Members \u2013 FROM-16<\/em><\/p>\n<ul>\n<li>Every family member reported some degree of impact on their QoL. Our average score for ME\/CFS was much higher (=poorer QoL) than studies looking at other diseases such as cancer<\/li>\n<li>There was a strong link between the patients\u2019 QoL and that of their family members i.e. the poorer the patients\u2019 QoL, the greater the impact on their family members\u2019 QoL<\/li>\n<\/ul>\n<p><strong>Conclusion:<\/strong><br \/>\n<a href=\"https:\/\/wames.org.uk\/cms-english\/me-cfs-significant-negative-impact-of-quality-of-life-of-both-patients-family-members\/large-family\/\" rel=\"attachment wp-att-25094\"><img data-recalc-dims=\"1\" decoding=\"async\" class=\"alignleft size-medium wp-image-25094 lazyload\" data-src=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/large-family.jpg?resize=300%2C200&#038;ssl=1\" alt=\"\" width=\"300\" height=\"200\" data-srcset=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/large-family.jpg?resize=300%2C200&amp;ssl=1 300w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/large-family.jpg?resize=1024%2C682&amp;ssl=1 1024w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/large-family.jpg?resize=150%2C100&amp;ssl=1 150w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/large-family.jpg?resize=768%2C512&amp;ssl=1 768w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2020\/03\/large-family.jpg?w=1034&amp;ssl=1 1034w\" data-sizes=\"(max-width: 300px) 100vw, 300px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 300px; --smush-placeholder-aspect-ratio: 300\/200;\" \/><\/a>Our study has shown ME\/CFS has a major impact on both patients\u2019 and their family members\u2019 quality of life.\u00a0 In fact studies of cancer patients and their families found their quality of life to be higher. \u00a0Could this be because there is much more support from the NHS &amp; charities for them?\u00a0 We hope clinicians will become more aware of this so that more appropriate support can be provided. Education and awareness are very important, but setting up support groups for family members could be a good start.<\/p>\n<p>A larger-scale version of this study could be beneficial, as that could verify the findings and clarify the way forward for the NHS.<\/p>\n<p><a href=\"https:\/\/youtu.be\/sU28dAbbCVU?list=PLJV2oZMsotON2WJSXHBx-e09WUhkKdhCI\" target=\"_blank\" rel=\"noopener noreferrer\">Watch Esme speak at the CMRC conference<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome (ME\/CFS): significant negative impact of Quality of Life of both patients and family members, by Esme Brittain &nbsp; During my 3rd year at Cardiff medical school, I conducted a 6-week research project looking at the impact &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/me-cfs-significant-negative-impact-of-quality-of-life-of-both-patients-family-members\/\">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":[4056,5732,5734,5733,1073,1074,4551],"class_list":["post-25083","post","type-post","status-publish","format-standard","hentry","category-news","tag-cardiff-university","tag-esme-brittain","tag-family-reported-outcome-measures","tag-from-16","tag-qol","tag-quality-of-life","tag-whoqol-bref26"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-6wz","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/25083","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=25083"}],"version-history":[{"count":6,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/25083\/revisions"}],"predecessor-version":[{"id":25116,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/25083\/revisions\/25116"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=25083"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=25083"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=25083"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}