{"id":35143,"date":"2022-05-04T08:42:46","date_gmt":"2022-05-04T07:42:46","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=35143"},"modified":"2022-05-04T08:42:46","modified_gmt":"2022-05-04T07:42:46","slug":"me-cfs-has-significant-impact-on-quality-of-life-for-people-with-me-cfs-their-families","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/me-cfs-has-significant-impact-on-quality-of-life-for-people-with-me-cfs-their-families\/","title":{"rendered":"ME\/CFS has significant impact on Quality of Life for people with ME\/CFS & their families"},"content":{"rendered":"

Impact of myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) on the quality of life of people with ME\/CFS and their partners and family members: an online cross-sectional survey<\/a>, by Jui Vyas, Nina Muirhead, Ravinder Singh, Rachel Ephgrave, Andrew Y Finlay in<\/span>\u00a0BMJ Open<\/em> 2022;12:e058128. [doi: 10.1136\/bmjopen-2021-058128]<\/h3>\n

 <\/p>\n

Research abstract:<\/strong><\/h3>\n

Objectives<\/strong><\/p>\n

The aim of this study was to assess the impact of myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) on the quality of life (QoL) of people with ME\/CFS and their relative or partner (family member).<\/p>\n

Quality of life, the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events.\u00a0 \u00a0 \u00a0 \u00a0 (Britannica<\/a>)<\/p><\/blockquote>\n

Design <\/strong><\/p>\n

A patient-partner, multinational, subject-initiated, cross-sectional online survey.
\nSetting\u00a0International survey using ME\/CFS charities, support groups and social media.<\/p>\n

Participants <\/strong><\/p>\n

\"\"Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME\/CFS by health professional. 1418 people with ME\/CFS and their 1418 family members from 30 countries participated in the survey.<\/p>\n

Participants with ME\/CFS had a mean age of 45.8 years (range 18\u201381) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18\u201387) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME\/CFS.<\/p>\n

Interventions <\/strong><\/p>\n

EuroQoL-5<\/a> Dimension (EQ-5D-3L), completed by people with ME\/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.<\/p>\n

EuroQoL-5 measures 5 dimensions: mobility; self-care; usual activities; pain\/ discomfort; anxiety\/ depression<\/p><\/blockquote>\n

Results <\/strong><\/p>\n

The mean overall health status on a Visual Analogue Scale for people with ME\/CFS was 33.8 (0=worst, 100=best).<\/p>\n

A Visual Analogue Scale (VAS) is one of the pain rating scales… often used in epidemiologic and clinical research to measure the intensity or frequency of various symptoms.\u00a0 \u00a0(Physiopedia)<\/a><\/p><\/blockquote>\n

People with ME\/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. <\/strong><\/p>\n

For family members, the overall mean FROM-16<\/a> score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL.<\/p>\n

Impact on QoL was significantly correlated between the person with ME\/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.<\/strong><\/p>\n

Conclusions <\/strong><\/p>\n

To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME\/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME\/CFS on the QoL of people with ME\/CFS and their family members.<\/p>\n

Unanswered questions and future research<\/strong><\/p>\n

Not all people with ME\/CFS have a family member or partner to complete the FROM-16. Several individuals wrote to the research team explaining their isolation, difficulty maintaining family relationships and\/or lack of empathy of family members. Further research is needed to understand the wider impact of ME\/CFS on families and on individuals.<\/p>\n","protected":false},"excerpt":{"rendered":"

Impact of myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) on the quality of life of people with ME\/CFS and their partners and family members: an online cross-sectional survey, by Jui Vyas, Nina Muirhead, Ravinder Singh, Rachel Ephgrave, Andrew Y Finlay in\u00a0BMJ Open … Continue reading →<\/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-35143","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-98P","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/35143","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=35143"}],"version-history":[{"count":3,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/35143\/revisions"}],"predecessor-version":[{"id":35147,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/35143\/revisions\/35147"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=35143"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=35143"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=35143"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}