Peter Frampton, British rock star and icon, shared in 2019 that he has inclusion body myositis (IBM), an inflammatory muscle disease that can affect the strength of the legs, arms and fingers.
He has been candid about how the condition has affected his ability to play guitar (his signature instrument), while still remaining optimistic.
“Look, it’s not life-threatening,” he said in a 2019 interview. “It’s life-changing.”
In February 2019, the Johns Hopkins Myositis Center established the Peter Frampton Myositis Research Fund to support research into IBM.
Inclusion body myositis (IBM) is a rare, progressive inflammatory muscle disease that mainly affects adults over 40 years of age. It is classified as one of the idiopathic inflammatory myopathies, alongside conditions such as polymyositis and dermatomyositis, but differs in its slow progression and resistance to most treatments.
What’s happening at IBM?
IBM involves both inflammatory and degenerative processes. Immune cells attack muscle tissue, while abnormal protein deposits known as ‘inclusion bodies’ build up in the muscle fibers. Over time, this leads to muscle weakness and wasting.
Symptoms
IBM usually develops gradually over the years. Common symptoms include:
- Progressive muscle weakness, especially in the thighs and forearms
- Difficulty climbing stairs, getting up from a sitting position, or lifting objects
- Frequent falls due to weakened leg muscles
- Weak grip and loss of fine motor skills
- Difficulty swallowing (dysphagia), which can increase the risk of choking
- Muscle wasting (atrophy), often asymmetrical
Unlike other inflammatory myopathies, IBM often affects distal muscles (those further away from the body center), particularly the finger flexors and quadriceps.
Diagnosis
Diagnosis can be challenging due to the slow progression. This usually concerns:
- Blood tests (creatine kinase levels may be slightly elevated)
- Electromyography (EMG) to assess muscle activity
- Muscle biopsy, which confirms inflammation and inclusion bodies
- MRI scans to evaluate muscle damage
Management and treatment
There is currently no cure for IBM, and it often does not respond well to standard immunosuppressive therapies such as corticosteroids. Management focuses on maintaining functioning and quality of life:
- Physiotherapy: Helps maintain mobility, strength and balance
- Occupational therapy: Assists with daily activities and adaptive strategies
- Speech and swallowing therapy: Important for managing dysphagia
- Tools: Canes, braces, or wheelchairs may be needed as the disease progresses
- Nutritional Support: Helps prevent complications due to swallowing problems
Conclusion
Peter Frampton’s diagnosis helped raise awareness of Inclusion Body Myositis, a complex condition with both inflammatory and degenerative features. Early recognition and supportive care are essential for maintaining independence and improving quality of life.
