Unequal access to diagnosis of myalgic encephalomyelitis in England

Abstract

Background: People with Myalgic Encephalomyelitis (ME/CFS; sometimes referred to as chronic fatigue syndrome) experience 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 prevalence estimates vary greatly due to uneven diagnosis and misdiagnosis. Factors that influence diagnosis could be revealed by stratifying a single population by gender, age and ethnicity.

Methods: Hospital Episode Statistics data, routinely collected by the NHS in England, was downloaded from the Feasibility Self-Service of NHS DigiTrials. This was used to stratify individuals with the ICD-10 code that best reflects ME/CFS symptoms (G93.3) according to age, self-reported gender and ethnicity, General Practice and NHS England Integrated Care Board (ICB).

Results: 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' 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 fivefold 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.

Conclusion: Other-than-white ethnic groups, older females (> 60y), older males (> 80y), and people living in areas of multiple deprivation are disproportionately undiagnosed with ME/CFS. Lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 404,000 UK individuals overall (0.6%). This improved estimate of ME/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by ME/CFS.

Keywords: Ethnicity bias; Gender bias; Myalgic Encephalomyelitis prevalence; NHS England.

Fig. 1

Diagnoses across 42 English Integrated Care Boards (ICB). A Ratios of female-to-male ME/CFS diagnoses (ICD-10:G93.3 codes) by ICB. B Point prevalence of males (left) or females (right) with ME/CFS stratified by ethnicity: either white or other-than-white. Blue: white females; Orange: Other-than-white Females; Green: white Males; Purple: Other-than-white Males

Fig. 2

ME/CFS diagnoses by age or deprivation. A Ages of females or males with ME/CFS diagnoses in England (light blue: females; dark blue: males; black: overall ratio) as of 7th October 2023. The female-to-male ME/CFS diagnosis ratios for every age decade are shown in boxes. (B) ME/CFS patients partitioned by Indices of multiple deprivation (IMD) in deciles. (C) As (B), but separated by self-reported white or other-than-white ethnicities

Fig. 3

Relative prevalence of ME/CFS and other diseases stratified by ethnic group, age and gender. A Prevalence of ME/CFS (ICD-10:G93.3), Fibromyalgia (ICD-10: M79.7), Rheumatoid arthritis (M05.3, M05.8, M05.9, M06.0, M06.8, M06.9 or M08.0), clinical depression (F32 or F33 codes), Irritable Bowel Syndrome (K58.0 or K58.9), Coeliac Disease (K90.0), or Multiple Sclerosis (G35) for self-reported ethnicities relative to ‘white British’. Codes were downloaded from NHS DigiTrials on 8^th October 2023. B ME/CFS prevalence for female or male groups, of younger or older age, and of white or other-than-white ethnicity, relative to young (≤ 40y old) white males (normalised to 1.0)

Fig. 4

English GP practices. Numbers of active GP practices without registered ME/CFS patients recorded in HES stratified by indices of multiple deprivation