What is inclusion body myositis?

Inclusion Body Myositis (IBM) is a rare, progressive muscle disease characterized by chronic muscle inflammation and weakness. It is the most common acquired muscle disease in adults over 50, affecting approximately 20,000 people in the United States.

Sporadic IBM (sIBM), the most common form, is NOT inherited — it occurs randomly. However, about 67% of patients carry a specific HLA gene combination that makes them genetically susceptible. Hereditary Inclusion Body Myopathies (hIBM) are a separate group of genetic muscle diseases.

Is there a cure for IBM?

As of 2026, there are no FDA-approved treatments specifically for IBM. The disease is notoriously resistant to corticosteroids and immunosuppressive drugs. Physical therapy and adaptive strategies are the mainstay of management. Active research is underway with promising clinical trials.

Does IBM qualify for disability benefits?

Yes. IBM is listed under Section 11.15 (Disorders of the Peripheral Nervous System) in the SSA Blue Book for Social Security Disability Insurance (SSDI). The IBM Functional Rating Scale can support your application.

What exercises are safe with IBM?

Walking, aquatic therapy, light resistance training, balance training, and hand/finger exercises are all recommended for IBM patients. Start slowly, build over 6-12 weeks, and consult with a physical therapist who understands myositis.

Why is IBM often misdiagnosed?

IBM is frequently misdiagnosed as polymyositis, normal aging, fibromyalgia, ALS, or sarcopenia. The average diagnostic delay is 5-10 years from symptom onset because IBM shares symptoms with more common conditions.

Resources — IBM Awareness

Key Organizations

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The Myositis Association (TMA)

800-821-7356 — Primary patient resource: support groups, find-a-doctor, emergency resources

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Myositis Support and Understanding (MSU)

Patient-led nonprofit — IBM research grants since 2022, financial assistance for mobility devices and travel, support groups, monthly Zoom sessions, and patient-led research hub

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NINDS / NIH

National Institute of Neurological Disorders and Stroke — IBM overview and research

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Muscular Dystrophy Association

800-572-1717 — Care centers, research funding, clinical trial finder

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NICHD

National Institute of Child Health and Human Development — neuromuscular research

Essential Tools and Downloads

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IBM Functional Rating Scale

PDF download from myositis.org — Quantify functional limitations for insurance claims

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TMA Emergency Resources

Wallet card, ER guide, My MyoHistory form — Download from myositis.org

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IBM Home Exercise Program

PDF from myositis.org — Tailored exercises for IBM patients

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The Dysphagia Cookbook

By Elayne Achilles — Available through TMA for safe eating strategies

Clinical Trials and Research

Clinical trials are essential for advancing IBM treatment. Current areas of active research include:

Rapamycin (Sirolimus): mTOR inhibitor enhancing autophagy to clear protein aggregates
BCG Vaccine: Immunomodulatory effects being studied
Anti-amyloid therapies: Targeting the beta-amyloid hypothesis
Stem cell therapies: Mesenchymal stem cells for muscle regeneration
Gene therapy: Approaches targeting specific genetic variants

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ClinicalTrials.gov

Search "Inclusion Body Myositis" for active trials

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MDA Clinical Trials Finder

Search for neuromuscular disease clinical trials

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Patient Led Research Hub

IBM and caregiver research conducted by patients (myositispatientresearch.org)

MSU-Funded IBM ResearchMyositis Support and Understanding (MSU) has been funding IBM-focused research grants since 2022, including biosensic wearables (KU/Dr. Dimachkie), falls and fractures (UT Tyler), mitochondria-myo transfer research, and a dysphagia awareness series.

Support Groups

TMA Support Groups — In-person and virtual groups organized by region and interest
TMA Affinity Groups — Men Managing Myositis, Young Adults, Caregivers
TMA Community Forum — Password-protected online discussion board
MyoCon — TMA's annual global myositis patient conference
MSU IBM Support Group — One of the oldest Facebook groups for IBM patients and caregivers
MSU Monthly Zoom Support — Monthly virtual support sessions for myositis patients
Myositis Warriors Facebook Group — Community support for myositis patients
International: Groups in Canada, Australia, New Zealand, Europe, and Asia

Finding Specialists

TMA Find a Doctor — Searchable directory of myositis specialists
Major centers: Mayo Clinic, Cleveland Clinic, Johns Hopkins, Massachusetts General, UCSF
Telemedicine: Many specialists now offer virtual consultations

Travel for expertiseIBM is rare enough that most general neurologists see very few cases. It's worth traveling to see a specialist experienced with IBM. TMA and MSU can help identify them.

Patient Voices and Personal Stories

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Jerry King — Living with IBM Video Series

Personal video series documenting life with inclusion body myositis

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Bill Tillier — IBM Myositis

Well-respected resource for exacting research references and detailed IBM information (ibmmyositis.com)

Recommended Reading

"Inclusion Body Myositis: A Guide for Patients" by William Tillier, M.Sc. — Foreword by Dr. Steven A. Greenberg. A comprehensive patient guide covering diagnosis, management, and living with IBM.
"Rolling Back: Through a Life Disabled" by Mike Shirk (2014) — A personal account of living with IBM. Mike has since passed away, but his words continue to educate and inspire the IBM community.

IBM Awareness Guides

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Just Diagnosed

Step-by-step guidance for the first days and weeks after an IBM diagnosis

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Early Stage Tips

Exercise, energy conservation, workplace accommodations, and finding specialists

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Middle Stage Tips

Adaptive strategies, fall prevention, and maintaining independence

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Advanced Stage Tips

Wheelchair use, communication tools, and comfort-focused care

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General Tips

Nutrition, pain management, sleep, and mental health support

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Adaptive Clothing

Easy-dress options, magnetic closures, and dressing strategies

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Home Modifications

Ramps, grab bars, stairlifts, and kitchen/bathroom adaptations

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Caregiving Guide

Support for caregivers — assistance techniques, self-care, and resources

Additional Resources

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The Oley Foundation

Support for tube feeding and home IV nutrition (oley.org)

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IDDSI

International Dysphagia Diet Standardisation Initiative (iddsi.org)

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Caregiver Action Network

Resources and support for caregivers (caregiveraction.org)

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Administration on Aging

Federal aging and disability resources (acl.gov)

MSU Financial Assistance ProgramMSU provides financial assistance for IBM patients including travel expenses for transfer surgery and expense deferment for mobility devices. They also produce a Burden of Care Study with a Resource Toolkit for patients and care partners on emotional coping.

Key Researchers and Institutions

Dr. Marinos Dalakas (Thomas Jefferson University) — Pioneer in IBM research; established IVIg efficacy
Dr. Steven Greenberg (Brigham and Women's Hospital/Harvard) — Leading researcher on IBM pathogenesis
Dr. Conrad Weihl (Washington University) — Clinical features research
Dr. Julie Paik (Johns Hopkins University) — Clinical management
Dr. Pedro Machado (University College London) — Sporadic IBM research
Dr. Vanda Askanas and Dr. Walter Engel (USC) — Pioneered the degenerative/amyloid hypothesis
Mayo Clinic — Major center for IBM diagnosis and research
Johns Hopkins Myositis Center — Clinical care and research