{"id":27909,"date":"2020-09-08T04:46:00","date_gmt":"2020-09-08T04:46:00","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=27909"},"modified":"2020-09-08T04:46:00","modified_gmt":"2020-09-08T04:46:00","slug":"factors-affecting-the-characterization-of-post-exertional-malaise-derived-from-patient-input","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/factors-affecting-the-characterization-of-post-exertional-malaise-derived-from-patient-input\/","title":{"rendered":"Factors affecting the characterization of Post-Exertional Malaise derived from patient input"},"content":{"rendered":"

Factors affecting the characterization of Post-Exertional Malaise derived from patient input<\/a> by Carly S Holtzman, Claire Fisher, Shaun Bhatia, Leonard A Jason, in<\/span> Journal of Health Disparities Research and Practice<\/em>: Vol. 13 : Iss. 2 , Article 5.<\/h3>\n

\n

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

The National Institutes of Health\/Center for Disease Control and Prevention (NIH\/CDC) Common Data Elements (CDE) established a post-exertional malaise (PEM) workgroup with the task of describing PEM and recommending a standardized way of assessing it in patients with myalgic encephalomyelitis and chronic fatigue syndrome (ME\/CFS).<\/p>\n

As a stigmatized group, patients with ME\/CFS are in need of instruments which can properly describe their symptomatic experiences, which can help reduce the disparity between illness seriousness and appropriate attention from healthcare.<\/p>\n

The current study explored attitudes and preferences among 115 patients with ME\/CFS who participated in the creation of a patient-driven instrument to measure PEM, the key symptom of the illness. Themes that emerged from the qualitative analyses of patient feedback focused on how their illness was experienced; their access to care; problems with physicians, researchers, and research methods; and expressions of gratitude for the collaborative process.<\/p>\n

Domains that were most important to the patient community were identified in the effort to create a comprehensive measure of PEM. Benefits of community-based action research are discussed.<\/p>\n

Four themes emerged from the Facebook discussions regarding PEM:
\n(1) illness experience;
\n(2) consequences;
\n(3) issues in the field;
\n(4) attitudes and interactions.
\nWe explain the components of each theme and illustrate how patients\u2019 Facebook comments were taken into consideration during the participatory process of creating a PEM questionnaire.<\/p>\n

\"\"<\/p>\n

Study conclusion:<\/strong><\/h3>\n

Overall, analyzing Facebook comments related to the experience of PEM has led to new
\ninsights, which in turn allowed us to create a comprehensive, patient-driven questionnaire assessing PEM. Our goal was to identify the most important aspects of PEM, as well as how the patient community interacted with each other via Facebook.<\/p>\n

This action-oriented process has led us to believe that it is crucial to collaborate with the patient community which can result in a more insightful, accurate and valid perspective of the illness.<\/p>\n

This qualitative analysis using community based action research has made substantial contributions to the study of PEM, and ME\/CFS in general. It is our hope to provide a model of how scientists and patients in this area can work together in the development of methods and instruments to better assess this illness.<\/p>\n","protected":false},"excerpt":{"rendered":"

Factors affecting the characterization of Post-Exertional Malaise derived from patient input by Carly S Holtzman, Claire Fisher, Shaun Bhatia, Leonard A Jason, in Journal of Health Disparities Research and Practice: Vol. 13 : Iss. 2 , Article 5. Research abstract: … 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":[4685,6195,93,4815,584,585,2241,4904],"class_list":["post-27909","post","type-post","status-publish","format-standard","hentry","category-news","tag-carly-s-holtzman","tag-claire-fisher","tag-diagnosis","tag-patient-involvement","tag-pem","tag-post-exertional-malaise","tag-prof-leonard-jason","tag-shaun-bhatia"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-7g9","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/27909","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=27909"}],"version-history":[{"count":3,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/27909\/revisions"}],"predecessor-version":[{"id":27940,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/27909\/revisions\/27940"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=27909"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=27909"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=27909"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}