DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

Devereux-Cooke, Andy; Leary, Sian; McGrath, Simon J.; Northwood, Emma; Redshaw, Anna; Shepherd, Charles; Stacey, Pippa; Tripp, Claire; Wilson, Jim; Mar, Margaret; Boobyer, Danielle; Bromiley, Sam; Chowdhury, Sonya; Dransfield, Claire; Almas, Mohammed; Almelid, Øyvind; Buchanan, David; Garcia, Diana; Ireland, John; Kerr, Shona M.; Lewis, Isabel; McDowall, Ewan; Migdal, Malgorzata; Murray, Philip I.; Perry, David; Ponting, Chris P.; Vitart, Véronique; Wolfe, Jareth C.

doi:10.1186/s12883-022-02763-6

Cited by 7 publications

(2 citation statements)

References 21 publications

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“…As a co-production, PPI members advised and helped to create both our recruitment strategy and recruitment materials. Further description of DecodeME’s recruitment methods and PPI aspects can be found elsewhere 14 . Before study launch, public awareness of DecodeME was enhanced using regular podcasts, webinars, blog posts and media interviews.…”

Section: Methodsmentioning

confidence: 99%

“…Diverse methods used to identify potential participants are detailed in the open access DecodeME Study Protocol publication 14 . Between its full launch date of September 12, 2022 and a data freeze performed on December 19, 2022, DecodeME recruited 17,074 female or male participants who self-reported a diagnosis of ME, CFS, ME/CFS or CFS/ME by a health professional and consented to participate.…”

Section: Methodsmentioning

confidence: 99%

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Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Bretherick,

McGrath,

Devereux-Cooke

et al. 2023

NIHR Open Res

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Background: People with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) experience core symptoms of post-exertional malaise, unrefreshing sleep, and cognitive impairment. Despite numbering 0.2-0.4% of the population, no laboratory test is available for their diagnosis, no effective therapy exists for their treatment, and no scientific breakthrough regarding pathogenesis has been made. It remains unknown, despite decades of small-scale studies, whether individuals experience different types of ME/CFS separated by onset-type, sex or age. Methods: DecodeME is a large population-based study of ME/CFS that recruited 17,074 participants in the first 3 months following full launch. Detailed questionnaire responses from UK-based participants who all reported being diagnosed with ME/CFS by a health professional provided an unparalleled opportunity to investigate, using logistic regression, whether ME/CFS severity or onset type is significantly associated with sex, age, illness duration, comorbid conditions or symptoms. Results: The well-established sex-bias among ME/CFS patients is evident in the initial DecodeME cohort: 83.5% of participants were females. What was not known previously was that females tend to have more comorbidities than males. Moreover, being female, being older and being over 10 years from ME/CFS onset are significantly associated with greater severity. Five different ME/CFS onset types were examined in the self-reported data: those with ME/CFS onset (i) after glandular fever (infectious mononucleosis); (ii) after COVID-19 infection; (iii) after other infections; (iv) without an infection at onset; and, (v) where the occurrence of an infection at or preceding onset is not known. Among other findings, ME/CFS onset with unknown infection status was significantly associated with active fibromyalgia. Conclusions: DecodeME participants differ in symptoms, comorbid conditions and/or illness severity when stratified by their sex-at-birth and/or infection around the time of ME/CFS onset.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Bretherick,

McGrath,

Devereux-Cooke

et al. 2023

NIHR Open Res

Self Cite

View full text Add to dashboard Cite

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The genetics of ME: A commentary on Hajdarevic et al.

Ponting

McGrath

2022

Brain, Behavior, and Immunity

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Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study

Anderson,

Duffy,

Corry

2024

BMC Med Educ

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Introduction Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) is a chronic condition which may be characterised by debilitating fatigue, post-exertional malaise, unrefreshing sleep, and cognitive difficulties. ME/CFS has significant negative impact on quality of life for those living with the condition. This may be exacerbated by a lack of knowledge within healthcare regarding the condition. Previous research has found that immersive virtual reality (VR) educational experiences within healthcare education can increase knowledge and empathy. Methods The present study employed a quasi-experimental pre-test-post-test design to investigate the impact of a short immersive VR educational experience on knowledge of ME/CFS and empathy for those living with the condition. The VR experience placed participants into a virtual scene which told real life stories of the experience of people living with ME/CFS and their families. 43 participants completed in this pilot study: 28 medical students and 15 primary care health professionals. Participants completed measures of knowledge of ME/CFS and empathy before and after engagement with the experience. Results A statistically significant increase was found for levels of knowledge (p < .001, d = 0.74) and empathy (p < .001, d = 1.56) from pre-VR experience levels to post-VR experience levels with a medium and large effect size, respectively. Further analysis revealed no statistically significant difference between baseline levels of knowledge of ME/CFS between healthcare professionals and medical students. Discussion The present study is the first to explore the use of this short immersive VR experience as an education tool within healthcare to increase knowledge of ME/CFS, and empathy for those living with the condition. Findings allude to the previously established lack of knowledge of ME/CFS within healthcare although promisingly the increases in knowledge and empathy found suggest that this immersive VR experience has potential to address this. Such changes found in this small-scale pilot study suggest that future research into the use of VR as an educational tool within this setting may be beneficial. Use of a control group, and larger sample size as well as investigation of retention of these changes may also enhance future research.

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DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

Cited by 7 publications

References 21 publications

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

The genetics of ME: A commentary on Hajdarevic et al.

Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study

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