{"id":42781,"date":"2024-07-25T08:56:50","date_gmt":"2024-07-25T07:56:50","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=42781"},"modified":"2024-07-25T08:56:50","modified_gmt":"2024-07-25T07:56:50","slug":"research-me-cfs-diverse-experiences-one-recognisable-illness","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/research-me-cfs-diverse-experiences-one-recognisable-illness\/","title":{"rendered":"Research: ME\/CFS &#8211; diverse experiences, one recognisable illness"},"content":{"rendered":"<h2><strong>ME\/CFS is hetergeneous\u00a0<\/strong><\/h2>\n<p>&nbsp;<\/p>\n<p>This study found that although there is a wide variation in experience among the ME\/CFS patient population, it does not differ significantly across different clinics. According to the authors &#8220;this suggests that expert clinicans are recognizing the same clinical entity, albeit one that is far from <a href=\"https:\/\/dictionary.cambridge.org\/dictionary\/english\/homogeneous\" target=\"_blank\" rel=\"noopener\">homogeneous<\/a>.&#8221;<\/p>\n<h3><strong>SUMMARY<\/strong><\/h3>\n<ul>\n<li>This study aimed to assess whether different clinical practices across seven U.S. specialty clinics lead to variations in the identification of ME\/CFS (Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome) characteristics.<\/li>\n<li>Researchers utilized standardized questionnaires and data collection methods to compare patient characteristics and clinical features across these clinics.<\/li>\n<li>The results showed that despite slight statistical differences in demographic and clinical characteristics across sites, there were no clinically significant differences in the presentation of ME\/CFS symptoms and functions among the clinics.<\/li>\n<li>This suggests that different clinical practices do not lead to significant variations in how ME\/CFS is identified and managed among specialists.<\/li>\n<li>The study confirmed a wide range of symptom severity and functional impairment among ME\/CFS patients, highlighting the inherent heterogeneity of the disease. All clinics reported a broad distribution in symptom scores and health measures.<\/li>\n<li>The study also examined the use of different case definitions for ME\/CFS and found varying proportions of patients meeting each criterion across clinics, indicating that the choice of case definition can influence disease recognition and research outcomes.<\/li>\n<\/ul>\n<p><img data-recalc-dims=\"1\" decoding=\"async\" class=\"aligncenter size-full wp-image-44190 lazyload\" data-src=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2024\/07\/heterogeneity_research.jpg?resize=718%2C718&#038;ssl=1\" alt=\"\" width=\"718\" height=\"718\" data-srcset=\"https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2024\/07\/heterogeneity_research.jpg?w=718&amp;ssl=1 718w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2024\/07\/heterogeneity_research.jpg?resize=300%2C300&amp;ssl=1 300w, https:\/\/i0.wp.com\/wames.org.uk\/cms-english\/wp-content\/uploads\/2024\/07\/heterogeneity_research.jpg?resize=150%2C150&amp;ssl=1 150w\" data-sizes=\"(max-width: 718px) 100vw, 718px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 718px; --smush-placeholder-aspect-ratio: 718\/718;\" \/><\/p>\n<h3><strong>DEFINITIONS<\/strong><\/h3>\n<p><strong>Case Definition<\/strong>: A set of standard criteria for determining whether a person has a particular disease or condition, used in research and clinical diagnostics to ensure consistency across studies and treatments.<\/p>\n<p><strong>Functional Impairment<\/strong>: A decrease in a patient&#8217;s ability to perform daily activities due to the effects of a medical condition.<\/p>\n<p><strong>Heterogeneity<\/strong>: In medical research, this refers to the variation in disease presentation and progression among different individuals with the same diagnosis.<\/p>\n<h3><strong>RESEARCH ABSTRACT<\/strong><\/h3>\n<h3><strong>Background:\u00a0<\/strong><\/h3>\n<p>One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) recognized the same clinical entity.<\/p>\n<p><strong>Methods:\u00a0<\/strong><\/p>\n<p>We enrolled participants from seven specialty clinics in the United States. We used baseline data (n = 465) on standardized questions measuring general clinical characteristics, functional impairment, post-exertional malaise, fatigue, sleep, neurocognitive\/autonomic symptoms, pain, and other symptoms to evaluate whether patient characteristics differed by clinic.<\/p>\n<p><strong>Results:\u00a0<\/strong><\/p>\n<p>We found few statistically significant and no clinically significant differences between clinics in their patients\u2019 standardized measures of ME\/CFS symptoms and function. Strikingly, patients in each clinic sample and overall showed a wide distribution in all scores and measures.<\/p>\n<p><strong>Conclusions:<\/strong><\/p>\n<p>Illness heterogeneity may be an inherent feature of ME\/CFS. Presenting research data in scatter plots or histograms will help clarify the challenge. Relying on case\u2013control study designs without subgrouping or stratification of ME\/CFS illness characteristics may limit the reproducibility of research findings and could obscure underlying mechanisms.<\/p>\n<p><strong>Read full study:<\/strong><\/p>\n<p><a href=\"https:\/\/www.mdpi.com\/2077-0383\/13\/5\/1369\" target=\"_blank\" rel=\"noopener\">Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics,<\/a> by by Elizabeth R Unger et al <span style=\"text-decoration: underline;\">in<\/span><br \/>\n<em>J. Clin. Med.<\/em> 2024, 13, 1369. [doi.org\/10.3390\/jcm13051369]<\/p>\n<p><strong>Read ME Research UK&#8217;s overview:<\/strong><\/p>\n<p><a href=\"https:\/\/www.meresearch.org.uk\/disease-heterogeneity-among-people-with-me-cfs\/\" target=\"_blank\" rel=\"noopener\">Disease heterogeneity among people with ME\/CFS<\/a><\/p>\n<p>Although a lack of variation between clinics was identified, the participants within each clinic \u2013 and in the overall sample \u2013 showed a wide distribution in scores and measures, indicating overall disease heterogeneity.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>ME\/CFS is hetergeneous\u00a0 &nbsp; This study found that although there is a wide variation in experience among the ME\/CFS patient population, it does not differ significantly across different clinics. According to the authors &#8220;this suggests that expert clinicans are recognizing &hellip; <a href=\"https:\/\/wames.org.uk\/cms-english\/research-me-cfs-diverse-experiences-one-recognisable-illness\/\">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-42781","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-b81","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/42781","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=42781"}],"version-history":[{"count":7,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/42781\/revisions"}],"predecessor-version":[{"id":44215,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/42781\/revisions\/44215"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=42781"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=42781"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=42781"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}