Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Bretherick, Andrew D.; McGrath, Simon J.; Devereux-Cooke, Andy; Leary, Sian; Northwood, Emma; Redshaw, Anna; Stacey, Pippa; Tripp, Claire; Wilson, Jim; Chowdhury, Sonya; Lewis, Isabel; Almelid, Øyvind; Baby, Sumy V.; Baker, Tom; Becher, Hannes; Boutin, Thibaud; Clyde, Malgorzata; Garcia, Diana; Ireland, John; Kerr, Shona M.; McDowall, Ewan; Perry, David; Samms, Gemma L.; Vitart, Véronique; Wolfe, Jareth C.; Ponting, Chris P.

doi:10.3310/nihropenres.13421.2

Cited by 5 publications

(2 citation statements)

References 40 publications

(15 reference statements)

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“…The pilot cohort of 174 patients in this registry included 131 adults as well as 43 adolescents and children with ME/CFS. The female predominance and age peaks observed in this cohort are well-known for ME/CFS [ 71 , 72 ]. The youngest patient in our cohort was 11 years old, in line with a lower prevalence of ME/CFS in childhood compared to adolescence and adulthood [ 73 ].…”

Section: Discussionmentioning

confidence: 95%

The German Multicenter Registry for ME/CFS (MECFS-R)

Hieber,

Pricoco,

Gerrer

et al. 2024

JCM

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Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystemic disease characterized by a complex, incompletely understood etiology. Methods: To facilitate future clinical and translational research, a multicenter German ME/CFS registry (MECFS-R) was established to collect comprehensive, longitudinal, clinical, epidemiological, and laboratory data from adults, adolescents, and children in a web-based multilayer-secured database. Results: Here, we present the research protocol and first results of a pilot cohort of 174 ME/CFS patients diagnosed at two specialized tertiary fatigue centers, including 130 (74.7%) adults (mean age 38.4; SD 12.6) and 43 (25.3%) pediatric patients (mean age 15.5; SD 4.2). A viral trigger was identified in 160/174 (92.0%) cases, with SARS-CoV-2 in almost half of them. Patients exhibited severe functional and social impairment, as reflected by a median Bell Score of 30.0 (IQR 30.0 to 40.0) and a poor health-related quality of life assessed with the Short Form-36 health survey, resulting in a mean score of 40.4 (SD 20.6) for physical function and 59.1 (SD 18.8) for mental health. Conclusions: The MECFS-R provides important clinical information on ME/CFS to research and healthcare institutions. Paired with a multicenter biobank, it facilitates research on pathogenesis, diagnostic markers, and treatment options. Trial registration: ClinicalTrials.gov NCT05778006.

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Section: Discussionmentioning

confidence: 95%

The German Multicenter Registry for ME/CFS (MECFS-R)

Hieber,

Pricoco,

Gerrer

et al. 2024

JCM

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“…Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (hereafter: ME/CFS) is a chronic and debilitating disease that predominantly affects women, but also men, in all age groups [1]. The defining symptom of ME/CFS is post-exertional malaise (PEM), a marked worsening of existing symptoms even after minor physical and/or mental exertion.…”

Section: Introductionmentioning

confidence: 99%

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

Thoma,

Froehlich,

Hattesohl

et al. 2023

Medicina

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Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness. In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.

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Unequal access to diagnosis of myalgic encephalomyelitis in England

Samms,

Ponting

2024

Preprint

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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. 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; 'Postviral fatigue syndrome') according to their age, self-reported gender and ethnicity, General Practice and NHS England Integrated Care Board (ICB). 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 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. Those who are disproportionately undiagnosed with ME/CFS are other-than-white ethnic groups, older females (>60y), older males (>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.

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Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Cited by 5 publications

References 40 publications

The German Multicenter Registry for ME/CFS (MECFS-R)

The German Multicenter Registry for ME/CFS (MECFS-R)

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

Unequal access to diagnosis of myalgic encephalomyelitis in England

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