{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"institution":[{"name":"medRxiv"}],"indexed":{"date-parts":[[2026,3,3]],"date-time":"2026-03-03T17:02:35Z","timestamp":1772557355684,"version":"3.50.1"},"posted":{"date-parts":[[2024,2,1]]},"group-title":"Health Informatics","reference-count":37,"publisher":"openRxiv","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"accepted":{"date-parts":[[2024,2,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>People with Myalgic Encephalomyelitis (ME\/CFS; sometimes referred to as chronic fatigue syndrome) experience very poor health-related quality of life and only rarely recover. ME\/CFS has no curative treatment and no single diagnostic test. Public health and policy decisions relevant to ME\/CFS require knowledge of its prevalence and barriers to diagnosis. However, people with ME\/CFS report lengthy diagnostic delays and widespread misunderstanding of their symptoms. Published prevalence estimates vary greatly by country, gender, age and ethnicity.<\/jats:p>\n                <\/jats:sec>\n                <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Hospital Episode Statistics data is routinely collected by the NHS in England together with patient age, gender and ethnicity. This data, downloaded from the Feasibility Self-Service of NHS DigiTrials, was used to stratify individuals with the ICD-10 code that best reflects ME\/CFS symptoms (G93.3; \u201cPostviral fatigue syndrome\u201d) according to their age, self-reported gender and ethnicity, General Practice and NHS England Integrated Care Board (ICB).<\/jats:p>\n                <\/jats:sec>\n                <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>In all, 100,055 people in England had been diagnosed with ME\/CFS (ICD-10:G93.3) between April 1 1989 and October 7 2023, 0.16% of all registered patients. Of these, 79,445 were females and 20,590 males, a female-to-male ratio of 3.88:1. Female relative to male prevalence peaked at about 6-to-1 in individuals\u2019 fourth and fifth decades of life. Prevalence varied widely across the 42 ICBs: 0.086%-0.82% for females and 0.024%-0.21% for males. White individuals were approximately 5-fold more likely to be diagnosed with ME\/CFS than others; black, Asian or Chinese ethnicities are associated with particularly low rates of ME\/CFS diagnoses. This ethnicity bias is stronger than for other common diseases. Among active English GP practices, 176 (3%) had no registered ME\/CFS patients. Eight ICBs (19%) each contained fewer than 8 other-than-white individuals with a G93.3 code despite their registers containing a total of 293,770 other-than-white patients.<\/jats:p>\n                <\/jats:sec>\n                <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Those who are disproportionately undiagnosed with ME\/CFS are other-than-white ethnic groups, older females (&gt;60y), older males (&gt;80y), and people living in areas of multiple deprivation. The lifetime prevalence of ME\/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 390,000 UK individuals overall. This improved estimate of ME\/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by ME\/CFS.<\/jats:p>\n                <\/jats:sec>","DOI":"10.1101\/2024.01.31.24302070","type":"posted-content","created":{"date-parts":[[2024,2,1]],"date-time":"2024-02-01T18:45:11Z","timestamp":1706813111000},"source":"Crossref","is-referenced-by-count":3,"title":["Unequal access to diagnosis of myalgic encephalomyelitis in England"],"prefix":"10.64898","author":[{"given":"Gemma L.","family":"Samms","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0202-7816","authenticated-orcid":false,"given":"Chris P.","family":"Ponting","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"54368","reference":[{"key":"2024020422450468000_2024.01.31.24302070v1.1","unstructured":"Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome: Redefining an Illness. 2015."},{"key":"2024020422450468000_2024.01.31.24302070v1.2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0132421"},{"key":"2024020422450468000_2024.01.31.24302070v1.3","doi-asserted-by":"publisher","DOI":"10.1093\/occmed\/kqi013"},{"key":"2024020422450468000_2024.01.31.24302070v1.4","first-page":"412","article-title":"Estimating Prevalence, Demographics, and Costs of ME\/CFS Using Large Scale Medical Claims Data and Machine Learning","volume":"6","year":"2018","journal-title":"Front Pediatr"},{"key":"2024020422450468000_2024.01.31.24302070v1.5","doi-asserted-by":"publisher","DOI":"10.1186\/1741-7015-9-91"},{"key":"2024020422450468000_2024.01.31.24302070v1.6","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.163.13.1530"},{"key":"2024020422450468000_2024.01.31.24302070v1.7","doi-asserted-by":"crossref","first-page":"2129","DOI":"10.1001\/archinte.159.18.2129","article-title":"A Community-Based Study of Chronic Fatigue Syndrome","volume":"159","year":"1999","journal-title":"JAMA Intern Med"},{"key":"2024020422450468000_2024.01.31.24302070v1.8","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-121-12-199412150-00009"},{"key":"2024020422450468000_2024.01.31.24302070v1.9","doi-asserted-by":"crossref","unstructured":"Vahratian A , Lin J-MS , Bertolli J , Unger ER . 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