• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Countrygirl

Senior Member
Messages
5,479
Location
UK
https://openresearch.nihr.ac.uk/articles/3-20/v4

Home Browse Typing myalgic encephalomyelitis by infection at onset: A DecodeME...
CROSSMARK_Color_horizontal.svg




RESEARCH ARTICLE
REVISED

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study​

[version 4; peer review: 2 approved]

Andrew D. Bretherick
https://orcid.org/0000-0001-9258-3140
1,2, Simon J. McGrath3, Andy Devereux-Cooke3, Sian Leary3, Emma Northwood3, Anna Redshaw3, Pippa Stacey3, Claire Tripp3, Jim Wilson3, Sonya Chowdhury4, Isabel Lewis4, Øyvind Almelid
https://orcid.org/0000-0003-0163-3486
1, Sumy V. Baby1, Tom Baker1, Hannes Becher1, Thibaud Boutin1, Malgorzata Clyde1, Diana Garcia1, John Ireland1, Shona M. Kerr
https://orcid.org/0000-0002-4137-1495
1, Ewan McDowall1, David Perry1, Gemma L. Samms1, Veronique Vitart1, Jareth C. Wolfe1, Chris P. Ponting
https://orcid.org/0000-0003-0202-7816
1
Author details

Abstract​

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.

Keywords​

Myalgic encephalomyelitis, Post-viral syndrome, Post-exertional malaise, Sex-bias, Sub-types