{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T16:38:24Z","timestamp":1792773504895,"version":"4.5.0"},"reference-count":30,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T00:00:00Z","timestamp":1787702400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T00:00:00Z","timestamp":1787702400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>To co\u2010produce the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) with patients and clinicians, and to assess its content validity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Guided by the COSMIN guidelines, a draft CNAME was devised from relevant literature and lived experience. It was revised following piloting and cognitive interviews with the advisory groups and then completed online by people with ME. Content and face validity were assessed via deductive framework analysis of participants\u2019 feedback. Construct validity (in terms of relevance, duplication and comprehensibility) was assessed using frequencies, cross\u2010tabulations and response rates, respectively. As the CNAME produces dichotomous (yes\/no or not relevant) data, which are not summated and are not intended for repeated use, further psychometric analyses are not possible or relevant.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Four hundred people with ME participated. Comprehensibility was excellent (&gt;\u200997.5% item completion rate). There were no floor effects, but several items had a ceiling effect and were removed. Eight items demonstrated duplication and were combined. Participant feedback was positive, confirming that the CNAME addressed the issues that were important and relevant to them and was easy to complete.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The Clinical Needs Assessment for ME is a valid, feasible and acceptable measure of people with ME\/CFS\u2019 clinical needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient and Public Contribution<\/jats:title>\n                    <jats:p>Development of the CNAME was a patient\u2010led project (both the authors live with ME\/CFS) and it was co\u2010produced by people with ME\/CFS and clinicians working in NHS specialist ME\/CFS services. People with ME\/CFS and clinicians were involved in all stages of the study\u2014conceptualisation, design, conduct, analysis, interpretation and dissemination.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70854","type":"journal-article","created":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T02:26:06Z","timestamp":1787797566000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME)"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6301-8791","authenticated-orcid":false,"given":"Sarah F.","family":"Tyson","sequence":"first","affiliation":[{"name":"School of Health Science University of Manchester  UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Russell","family":"Fleming","sequence":"additional","affiliation":[{"name":"ME Association Buckingham Buckinghamshire UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,8,26]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.3390\/diagnostics9030080"},{"key":"e_1_2_9_3_1","volume-title":"ME\/CFS\/PVFS The ME Association Clinical and Research Guide","author":"Shepherd C.","year":"2022"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.3310\/nihropenres.13956.1"},{"key":"e_1_2_9_5_1","unstructured":"Office for National Statistics Prevalence of Ongoing Symptoms Following Coronavirus (COVID\u201019) Infection in the UK(Office for National Statistics 2023)."},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.159.18.2129"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/1741-7015-9-91"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.3390\/diagnostics9040124"},{"key":"e_1_2_9_9_1","unstructured":"Independent Working Group \u201cA Report on ME\/CFS Chief Medical Officer \u201d England 2002 http:\/\/www.erythos.com\/gibsonenquiry\/docs\/cmoreport.pdf."},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0132421"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1080\/21641846.2022.2062169"},{"key":"e_1_2_9_12_1","unstructured":"R. M.Hunter M.James andJ.Paxman \u201cChronic Fatigue Syndrome\/Myalgic Encephalomyelitis: Counting the Cost\u2014Full Report \u201d Counting\u2010the\u2010Cost\u2010CFS\u2010ME.pdf 2018 https:\/\/2020health.org\/."},{"key":"e_1_2_9_13_1","unstructured":"National Institute for Health and Care Excellence \u201cNG 206. Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome: Diagnosis and Management \u201d2021 http:\/\/www.nice.org.uk\/guidance\/ng206."},{"key":"e_1_2_9_14_1","unstructured":"Care Quality Commission \u201cAssessing Need \u201d2024 https:\/\/www.cqc.org.uk\/guidance-regulation\/providers\/assessment\/single-assessment-framework\/effective\/assessing-needs."},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0123012"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2014-000829"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.1999.01217.x"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1136\/jamia.2010.005660"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2011.04.020"},{"key":"e_1_2_9_20_1","doi-asserted-by":"crossref","first-page":"iii17","DOI":"10.1093\/ageing\/afz103.214","article-title":"331 Implementation of Community Based Comprehensive Geriatric Assessment and Intervention in a Rural Irish Setting","volume":"48","author":"McLoughlin P.","year":"2019","journal-title":"Age and Ageing"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2458-9-458"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-018-1829-0"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1080\/21641846.2024.2433390"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2023.1247698"},{"key":"e_1_2_9_25_1","unstructured":"S. F.Tyson \u201cHow to Enhance Your ME Research by Involving People With ME as Advisors and Participants \u201d2024 https:\/\/www.meresearch.org.uk\/wp-content\/uploads\/2023\/08\/Info-for-ME-researchers-FINAL.pdf."},{"key":"e_1_2_9_26_1","unstructured":"British Dyslexia Association \u201cDyslexia Style Guide \u201d2023 https:\/\/cdn.bdadyslexia.org.uk\/uploads\/documents\/Advice\/style-guide\/BDA-Style-Guide-2023.pdf?v=1680514568."},{"key":"e_1_2_9_27_1","unstructured":"British Association of Clinicians in ME (BACME) \u201cME\/CFS National Services Survey \u201d2023 https:\/\/bacme.info\/wp-content\/uploads\/2023\/10\/BACME-National-Services-Survey-Report-Oct23.pdf.pagespeed.ce.pRP7gfVNIi.pdf."},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.3390\/medicina57050510"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1080\/21641846.2022.212477"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.3310\/nihropenres.13421.2"},{"key":"e_1_2_9_31_1","unstructured":"M. E.Action \u201cProposal for Modifications to the G93.3 Terms in ICD\u201010\u2010CM to the National Center for Health Statistics \u201d2021 https:\/\/www.meaction.net\/wp-content\/uploads\/2021\/09\/ICD-10-CM-MECFS-Proposal.pdf."}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70854","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hex.70854","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70854","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T15:15:49Z","timestamp":1792768549000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70854"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,26]]},"references-count":30,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2026,10]]}},"alternative-id":["10.1111\/hex.70854"],"URL":"https:\/\/doi.org\/10.1111\/hex.70854","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"value":"1369-6513","type":"print"},{"value":"1369-7625","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,26]]},"assertion":[{"value":"2026-03-21","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-08-20","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-08-26","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70854"}}