Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey

Vyas, Jui; Muirhead, Nina; Singh, Ravinder; Ephgrave, Rachel; Finlay, A.Y.

doi:10.1136/bmjopen-2021-058128

Cited by 32 publications

(25 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…In the DecodeME cohort, females outnumber males by over five-to-one (83.5% females; 16.5% males). This is among the highest female-bias among those with ME/CFS yet reported internationally 3,9,21,[23][24][25][26][27] . Despite this strong bias, the substantial number of males participating in DecodeME (N=2,827) allowed the study to reveal previously unreported sex-biases in comorbidities or symptoms.…”

Section: Sex-and Age-bias Of Me/cfs Comorbidities and Symptomsmentioning

confidence: 80%

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

et al. 2023

View full text Add to dashboard Cite

Background: People with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) daily experience core symptoms of post-exertional malaise, unrefreshing sleep, and cognitive impairment or brain fog. 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 their 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. Their detailed questionnaire responses provided an unparalleled opportunity to investigate illness severity, onset, course and duration. 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’ comorbidities and symptoms tend to be more numerous 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 identified infectious onset; and, (v) where the occurrence of an infection at or preceding onset is not known. Conclusions: This revealed that people with a ME/CFS diagnosis are not a homogeneous group, as clear differences exist in symptomatology and comorbidity.

show abstract

Section: Sex-and Age-bias Of Me/cfs Comorbidities and Symptomsmentioning

confidence: 80%

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

et al. 2023

View full text Add to dashboard Cite

show abstract

“…The individual and socioeconomic impact of post-COVID syndrome and other post-infectious syndromes such as ME/CSF is considerable ( 21, 47, 48 ). Affected patients often face a double challenge, the one of the direct physical and mental suffering, and the one of the psychological burden of being affected by a disease with no clear biomarkers and absence of clear-cut, easily observable structural alterations.…”

Section: Discussionmentioning

confidence: 99%

“…This syndrome is entirely based on clinical criteria and exclusion of other diagnoses, plausibly consisting of different causal entities resulting in a similar phenotype, which is centered around a chronic fatigue aggravated by physical and/or mental activity and accompanied by other symptoms (e.g. sleep disturbances, neurocognitive deficits), leading to significant restrictions in everyday life (17)(18)(19)(20)(21). In the majority of patients, ME/CFS is triggered by an infection (22)(23)(24)(25)(26)(27)(28).…”

Section: Introductionmentioning

confidence: 99%

Post-COVID syndrome is associated with capillary alterations, macrophage infiltration and distinct transcriptomic signatures in skeletal muscles

Aschman

Wyler

Baum

et al. 2023

Preprint

View full text Add to dashboard Cite

The SARS-CoV-2 pandemic not only resulted in millions of acute infections worldwide, but also caused innumerable cases of post-infectious syndromes, colloquially referred to as long COVID. Due to the heterogeneous nature of symptoms and scarcity of available tissue samples, little is known about the underlying mechanisms. We present an in-depth analysis of skeletal muscle biopsies obtained from eleven patients suffering from enduring fatigue and post-exertional malaise after an infection with SARS-CoV-2. Compared to two independent historical control cohorts, patients with post-COVID exertion intolerance had fewer capillaries, thicker capillary basement membranes and increased numbers of CD169+ macrophages. SARS-CoV-2 RNA could not be detected in the muscle tissues, but transcriptomic analysis revealed distinct gene signatures compared to the two control cohorts, indicating immune dysregulations and altered metabolic pathways. We hypothesize that the initial viral infection may have caused immune-mediated structural changes of the microvasculature, potentially explaining the exercise-dependent fatigue and muscle pain.

show abstract

“…The incidence of patient fatigue in our study was significantly higher compared to the healthy control group. Chronic fatigue can adversely affect all aspects of quality of life (32). ; p = .…”

Section: Discussionmentioning

confidence: 99%

What is the quality of life in patients with long COVID compared to a healthy control group?

Líška

Liptáková

Babičová³

et al. 2022

Front. Public Health

View full text Add to dashboard Cite

IntroductionMany patients have prolonged symptoms after COVID-19 infection, which can affect patient quality of life (QOL). The aim of this study is to determine the quality of life in patients with long COVID, compared with healthy controls.Material and methodsThe study was a prospective cross-sectional study using an anonymous online survey. The SF-36 questionnaire was chosen for quality of life measurement. The survey was distributed through the Facebook social media platform targeting groups of patients with long COVID. The control group was made up of physiotherapy and physical education students.ResultsThere was a significant difference in physical function, with a mean score of 94.9 (±9.4) among the students, compared to long COVID patients with a mean score of 66.2 (±25.4) (p < 0.001). A similar result was found in the physical role (p < 0.001). The overall quality of life score for college students was 578.0 (±111.9), and the overall score for patients with long COVID was 331.9 (±126.9).ConclusionsPatients with long COVID had a lower quality of life compared to the healthy control group, and this was associated with the negative effect of long-COVID. Lower quality of life in patients with long COVID is an important therapeutic goal, which requires attention.

show abstract

Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey

Cited by 32 publications

References 28 publications

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Post-COVID syndrome is associated with capillary alterations, macrophage infiltration and distinct transcriptomic signatures in skeletal muscles

What is the quality of life in patients with long COVID compared to a healthy control group?

Contact Info

Product

Resources

About