Assessment of Pain Characteristics, Attribution, and Nociplasticity in Patients With Inflammatory Myopathies: An International Survey Study

Inclusion body myositis (IBM) causes progressive, quadriceps-predominant weakness that impairs mobility and increases fall risk, yet outcomes most relevant to independence remain unsynthesized for IBM. This review compiles direct IBM evidence across five domains (A1-A5): natural history, motor performance, falls and balance, sensory/peripheral-nerve function, and interventions. 

A follow-up to MSU Burden of Care in IIM patients, this study focused on patients experiences with falls, bone fractures, and treatments for their condition.   

Sporadic inclusion body myositis (sIBM) is a rare and slowly progressive skeletal muscle disease that can cause hand dysfunction, which is a major source of disability. Tendon transfers have been reliably used to improve function in other neuromuscular settings. Given that sIBM patients often present with flexion impairments and mostly functioning extensors, we investigated the […]

A follow-up to MSU 2022 Burden of Care in IIM patients,  this study focused on the financial burden of 202 patients living with idiopathic inflammatory myopathies (IIM).    

This study describes the development of Common Data Elements (CDEs) for myositis—standardized data definitions designed to improve how researchers collect, compare, and share information across studies. Although significant progress has been made in outcome measures for myositis, the field still faces major challenges due to lack of standardization and fragmented datasets. This is particularly important […]

A follow-up to MSU 2022 Burden of Care in IIM patients,  this study focused on the prevalence of caregiver burden (CB) in caregivers of patients with idiopathic inflammatory myopathies (IIM).    

  This study used direct lived-experience data collection, involving 149 Australian IBM patients and carers, defining what matters most to patients and carers.  The study identified 10 key priorities,  with the theme of “Uncertain Future” the highest priority issue.  Both patients and carers reported moderate to low coping scores and paints a striking picture of […]

Pain in Myositis Is Real! The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies”  published in Rheumatology was a groundbreaking moment for the myositis community and MSU ‘Right Now” Research What Was This Study About?This study looked at how common pain is in people living with Myositis, a rare […]

Observational Study on Anti- DMA5 Dermatomyositis (Peer-to-Peer)