Fatigue and associated factors in 172 patients with McArdle disease: An international web-based survey DOI Creative Commons
A. Slipsager, Linda Kahr Andersen, Nicol C. Voermans

et al.

Neuromuscular Disorders, Journal Year: 2023, Volume and Issue: 34, P. 19 - 26

Published: Nov. 10, 2023

McArdle disease is an autosomal recessive inherited caused by pathogenic variants in the PYGM gene, resulting virtual absence of myophosphorylase enzyme skeletal muscle. Patients experience physical activity intolerance, muscle pain, and fatigue. This study aimed to investigate other fatigue domains with Multidimensional Fatigue Inventory (MFI-20) along investigation potential contributing factors, including relevant lifestyle-related factors. We conducted a survey international cohort patients disease. The included questions on demographics disease-related symptoms, questionnaires: MFI-20, Insomnia Severity Index (ISI), International Physical Activity Questionnaire Short-Form (IPAQ-SF). One hundred seventy-four responses were data analyses. found relatively high scores all five (general (12.9 ± 2.2), mental (10.1 4.1), (13.7 reduced (12.1 motivation (10.4 3.4)). associated symptom severity (p < 0.005), lower levels (assessed IPAQ-SF) 0.05), poor sleep ISI) 0.05). These findings call for clinical focus future research into fatigue, health

Language: Английский

Generalized myasthenia gravis with acetylcholine receptor antibodies: A guidance for treatment DOI Creative Commons
Nils Erik Gilhus, Henning Andersen, Linda Kahr Andersen

et al.

European Journal of Neurology, Journal Year: 2024, Volume and Issue: 31(5)

Published: Feb. 6, 2024

Generalized myasthenia gravis (MG) with antibodies against the acetylcholine receptor is a chronic disease causing muscle weakness. Access to novel treatments warrants authoritative treatment recommendations. The Nordic countries have similar, comprehensive health systems, mandatory registers, and extensive MG research.

Language: Английский

Citations

24
Expert consensus recommendations for improving and standardising the assessment of patients with generalised myasthenia gravis DOI Creative Commons
Andreas Meisel, Francesco Saccà, Jennifer Spillane

et al.

European Journal of Neurology, Journal Year: 2024, Volume and Issue: 31(7)

Published: March 24, 2024

Regular and consistent disease assessment could provide a clearer picture of burden in generalised myasthenia gravis (gMG) improve patient care; however, the use tools practice lacks standardisation. This modified Delphi approach was taken to review current evidence on tool gMG develop expert-derived consensus recommendations for good practice.

Language: Английский

Citations

12
Measuring Overall Severity of Myasthenia Gravis (MG): Evidence for the Added Value of the MG Symptoms PRO DOI Creative Commons
Antoine Regnault, Thomas Morel, Christine de la Loge

et al.

Neurology and Therapy, Journal Year: 2023, Volume and Issue: 12(5), P. 1573 - 1590

Published: May 11, 2023

Accurate measurement of myasthenia gravis (MG) severity is required for appropriate clinical monitoring patients with MG and assessment the benefit new treatments in trials. Our objective was to explore how can be measured determine newly developed Symptoms Patient-Reported Outcome (PRO) instrument complements available measures severity. The conceptual coverage Quantitative (QMG), Composite (MGC), MG-Activities Daily Living (MG-ADL), PRO scrutinized against core symptoms MG: muscle weakness three groups (ocular, bulbar, respiratory), fatigability, physical fatigue. Post hoc analyses MG0002 study, a Phase 2a trial rozanolixizumab adults moderate severe generalized MG, included correlation Rasch model analyses. qualitative appraisal highlighted that only captured Data from 541 assessments (43 unique patients) were used Correlations ranged between 0.56 0.74 MG-ADL, QMG, MGC, Muscle Weakness Fatigability score, 0.20 0.71 scores focusing on independent groups. Analyses estimated meaningful continuum including all items, except ocular muscles, four instruments. QMG had broadest continuum. fatigability fatigue more characteristic low while bulbar indicated MG. reflected underpinned by MG-specific outcome measures. Only manifestations shown reflect possibly different facet With its modular nature comprehensive content, provides complementary information widely ClinicalTrials.gov identifier: NCT03052751. Myasthenia chronic disease affecting communication nerves muscles. People experience worsens after activity improves rest. affect body muscles (e.g., around eyes, limbs, face or throat). We show various summarize overall disease: people mild often report fast onset their limb fatigue, those also difficulties associated facial throat (leading difficulty swallowing speaking) respiratory (making breathing difficult). This ordering will help create accurate methods assess evaluate monitor clinic. suggest eyes eyelid drooping double vision) may represent aspect not provide as much other symptoms. However, this needs further investigation our study did include participants who eye symptom. document ability questionnaire, questionnaire completed patients, useful measuring

Language: Английский

Citations

15
EQ-5D-5L is a relevant tool for detecting patients with myasthenia gravis needing medical treatment DOI
Linda Kahr Andersen,

Kenneth M. Petersen,

Eva Maria Deurell

et al.

Journal of the Neurological Sciences, Journal Year: 2025, Volume and Issue: unknown, P. 123493 - 123493

Published: April 1, 2025

Language: Английский

Citations

0
Exercise and myasthenia gravis DOI

Simone Birnbaum,

Linda Kahr Andersen

International review of neurobiology, Journal Year: 2025, Volume and Issue: unknown

Published: Jan. 1, 2025

Language: Английский

Citations

0
Challenges navigating thymectomy with myasthenia gravis: A qualitative study of patient treatment experiences DOI Creative Commons
Malene Missel, René Horsleben Petersen,

Erik Lilja Secher

et al.

Applied Nursing Research, Journal Year: 2025, Volume and Issue: unknown, P. 151961 - 151961

Published: May 1, 2025

Language: Английский

Citations

0
Exercise and myasthenia gravis DOI
Jiayu Shi, Ying Kiat Tan, Yangyu Huang

et al.

Rare Disease and Orphan Drugs Journal, Journal Year: 2025, Volume and Issue: 4(2)

Published: May 15, 2025

Myasthenia gravis (MG) is an autoimmune disease primarily affecting the neuromuscular junction. Its main clinical manifestations are fluctuating muscle weakness and easy fatigability, which currently believed to be caused by disease-specific autoantibodies. Pharmacological therapy first-line treatment for MG, regimens including glucocorticoids, immunosuppressants, pyridostigmine considered significantly improve patients’ manifestations, enabling patients achieve goal of minimal manifestation status (MMS). Supportive also equally important in practice. Traditionally, it was thought that exercise might exacerbate symptoms MG patients; however, with a deeper understanding publication relevant research findings, now moderate can benefit stable patients.

Language: Английский

Citations

0
Phytochemistry and antifatigue activities of Carica papaya leaf from geothermal, coastal and urban areas, Indonesia DOI Creative Commons
Aditya Candra, Yudha Fahrimal, Yusni Yusni

et al.

Narra J, Journal Year: 2024, Volume and Issue: 4(1), P. e321 - e321

Published: March 13, 2024

Fatigue, a condition of lack energy and motivation resulting in the feeling extreme tiredness or exhaustion, is usually prevented treated with ergogenic aids, such as form nutritional supplements. Papaya (Carica papaya) may be potential candidate for considering its healthy secondary metabolite properties number compounds that could affected by location where plant growing. The aim this study was to identify phytochemicals papaya leaves from three different locations: geothermal, coastal, urban areas Aceh province, Indonesia. Concentrations leaf highest were tested rats measure blood lactate acid concentrations after strenuous exercise. chemical identified locations 24 compounds; 23 17 compounds, respectively. concentration have antifatigue activity contained all samples neophytadiene, linolenic acid, gamma tocopherol, hexadecanoic vitamin E, carpaine, octadecatrienoic nor lean-12-ene, squalene, phytol. Furthermore, most compounds' found coastal area and, therefore, on animal model. Treatment provided 12 male doses powder supplements 15 days. results showed lactic levels received dose 400 mg/kg extract reduced (p=0.014) compared control group. This highlights activities herbal aid able reduce

Language: Английский

Citations

3
Genetically predicted effects of physical activity and sedentary behavior on myasthenia gravis: evidence from mendelian randomization study DOI Creative Commons
Jiao Li, Fei Wang, Chen Zhang

et al.

BMC Neurology, Journal Year: 2023, Volume and Issue: 23(1)

Published: Aug. 11, 2023

Abstract Background Myasthenia gravis (MG) is an autoimmune disorder affecting the neuromuscular junction. Despite potential benefits of higher physical activity and lower sedentary behavior in MG patients, evidence from observational studies for effect on risk limited inconclusive. Methods We employed linkage disequilibrium score (LDSC) regression, two-sample Mendelian randomization (MR), its multivariable extension analyses (MVMR) to assess relationship between leisure screen time (LST), moderate-to-vigorous intensity during (MVPA) using genome-wide association (GWAS) summary datasets. MR were performed inverse-variance-weighted (IVW), weighted-median, MR-Egger regression. Sensitivity further alternative instruments test robustness our findings. Results found genetic overlap LST (rg = 0.113, P 0.023) MG, as well MVPA (rg=-0.220, 0.0001) LDSC method. The results suggested liability increased (IVW OR 1.609, 95% CI 1.153 2.244; 0.005). This was particularly notable late-onset 1.698, 1.145 2.518; 0.008), but not early-onset MG. Consistent findings obtained MVMR analysis BMI covariate 1.593, 1.167 2.173, 0.003). However, does support a substantial causal Conclusion Our measured by indicating that lack exercise may play role development Longitudinal interventional this are warranted.

Language: Английский

Citations

5
Physical Activity and Sedentary Behaviour in People with Myasthenia Gravis: A Cross-Sectional Study DOI
Tahlia Alsop, Katrina Williams, Sjaan R. Gomersall

et al.

Journal of Neuromuscular Diseases, Journal Year: 2021, Volume and Issue: 9(1), P. 137 - 146

Published: Oct. 9, 2021

Despite improvements in the medical management of myasthenia gravis (MG) recent years, patients continue to report poor health and wellbeing outcomes such as high levels fatigue, reduced quality life (QoL), walking limitation lowered balance confidence. Physical activity has been shown be associated with these other populations, however, there limited research adults MG.To describe physical sedentary behaviour MG explore associations between behaviours QoL, confidence limitation.A self-report online survey was used assess activity, behaviour, MG. Multiple linear regression examine descriptive statistics were analyse participant characteristics, behaviour.Eighty-five included (mean age 48±16 years). Over half participants (n = 53, 62.4%) reported sufficient meet public guidelines. Participants an average 9 h/day time 9.0±3.5). fatigue (R2 0.196), QoL 0.330), 0.305) 0.304) significantly (p < 0.05) positively correlated, no found for behaviour. When patterns combined, lower 0.213), higher 0.364), 0.341) 0.279) observed who had greater (> 150 mins/week) (< 10 h/day).Higher is favorable Further required ascertain whether may appropriate target intervention improve this population.

Language: Английский

Citations

10