Peter Frampton, the iconic singer and guitarist behind the legendary album Frampton Comes Alive!, has continued to captivate audiences for decades. Known for hits like “Show Me the Way” and “Baby, I Love Your Way,” Frampton’s career has spanned across bands, collaborations, and solo success. However, in recent years, Frampton has faced a personal challenge that has brought a new dimension to his journey: a diagnosis of Inclusion Body Myositis, or IBM. This article delves into what IBM is, how it has affected Peter Frampton, and what he is doing to raise awareness and support research for this rare condition.
It was about a decade ago, during a father-son weekend in Big Sur, California, that Frampton first noticed something amiss. While hiking with his son Julian, he found himself struggling to keep pace. “It was a father-son rustic weekend,” Frampton recounted. “We took our guitars, we jammed, I wrote a song, and we went hiking in this beautiful area.” He remembers Julian quickly ascending a hill while he lagged behind. Reaching the top, Frampton admitted to his son, “You know, Julian, I’m finding this more difficult than usual.”
At the time, Frampton, then 60, attributed his fatigue to the natural effects of aging and the wear and tear from his extensive music career. His journey had included stints with bands like the Herd and Humble Pie, collaborations with music legends such as David Bowie and Ringo Starr, tours with renowned artists, and a Grammy Award win in 2006. However, these initial signs were just the beginning of a journey toward understanding a more profound health issue.
Over the next couple of years, subtle yet persistent symptoms emerged. Frampton noticed difficulty running while playing Frisbee backstage, further hinting that something was not quite right. He initially dismissed these concerns, but in 2015, two falls on stage within a short period became a turning point. “I got up and we all laughed, but it was humiliating,” he confessed. These incidents prompted him to seek a medical checkup in Nashville, marking the start of his diagnostic journey.
His primary care physician quickly noticed a significant weight loss of 10 pounds since their last meeting and recommended further investigation. This led Frampton to a neurologist who, through a series of tests, began to unravel the mystery behind his symptoms. One test involved Frampton making a tight fist, which the doctor was able to easily pry open, revealing muscle weakness. Another test assessed his leg strength through jumps, where he could only manage four jumps on his left leg compared to ten on his right.
Following laboratory testing, the neurologist delivered the diagnosis: not ALS, as initially suspected, but Inclusion Body Myositis (IBM). While sharing similarities with ALS as a progressive neuromuscular disorder, IBM is not fatal. Further tests, including a muscle biopsy, confirmed the diagnosis, setting Frampton on a path to understand and live with this rare condition.
Understanding Inclusion Body Myositis (IBM)
Inclusion Body Myositis (IBM) is a rare and progressive neuromuscular disease characterized by muscle weakness and wasting (atrophy). Like ALS, it affects the muscles, but it progresses more slowly and is not considered a terminal illness. IBM is distinguished by its asymmetric pattern of muscle weakness, often affecting one side of the body more than the other, which was evident in Frampton’s leg strength test.
Muscles commonly affected by IBM include the quadriceps, crucial for knee stability and walking, and finger flexors, essential for hand dexterity. Weakness in the quadriceps can lead to falls, a frequent reason why individuals with IBM seek medical attention. The impact on finger flexors can be particularly challenging, affecting fine motor skills needed for everyday tasks and, notably for Frampton, playing the guitar. As Dr. Yadollah Harati, a neurology professor at Baylor College of Medicine, explains, IBM can make actions like “turning a car key, using a screwdriver, holding utensils, or turning a doorknob” increasingly difficult.
While some individuals with IBM may experience swallowing difficulties, Frampton has not reported this symptom. Currently, there is no cure or effective treatment for IBM, apart from surgical intervention for swallowing issues in some cases. Dr. Harati emphasizes that IBM is ultimately a debilitating condition.
IBM is considered a rare disease, estimated to affect around 30,000 Americans. However, Dr. Harati suggests it may be more prevalent than diagnosed, often misattributed to aging or other muscle disorders like arthritis or ALS. Diagnosis can be delayed by five to eight years, as symptoms may be mistakenly dismissed as normal age-related weakness. Frampton himself points out, “People think becoming significantly weaker with age is normal. It’s not.”
Neurologists often specify sporadic Inclusion Body Myositis (sIBM), the most common form, to differentiate it from familial Inclusion Body Myositis (fIBM), a much rarer, hereditary variant. The term “IBM” is generally used interchangeably with sIBM outside of research settings.
The exact cause of IBM remains unclear and is a subject of ongoing research. The term “myositis” indicates muscle inflammation, while “inclusion body” refers to abnormal protein clumps found within muscle cells. While inflammation suggests an autoimmune component, typical autoimmune treatments like corticosteroids and immunosuppressants are generally ineffective against IBM. Current research is exploring a potential link between sIBM and mitochondrial dysfunction, the energy-producing component of cells, as a primary cause. However, FDA-approved therapies for mitochondrial disease are not yet available.
Frampton’s Resilience and Continued Music
Despite the diagnosis of this career-altering condition, Peter Frampton has maintained a remarkably positive and proactive approach. Drawing on past life challenges, including overcoming substance abuse and career setbacks, Frampton emphasizes pragmatism and positivity. “I knock the dust off and get myself back up,” he states. “I’m very pragmatic about this disease and am always positive. I have to be. IBM isn’t life-ending, it’s life-altering.”
Following his diagnosis, Frampton consulted with Dr. Lisa Christopher-Stine at Johns Hopkins Myositis Center. Dr. Christopher-Stine initially expected a demanding rock star persona but found Frampton to be “disarming, genuine, charming, and a lovely human being.” Clinically, he presented as a typical IBM patient, but Dr. Christopher-Stine was struck by Frampton’s exceptional guitar playing ability despite the disease. “I assumed everybody’s finger flexors got weak,” she noted, “But his ability to work them was preserved.”
While experiencing some hand weakness, Frampton’s guitar playing has remained largely unaffected. He acknowledges limitations in lifting heavy objects but affirms, “But on guitar, I’m still at the top of my game.” This observation led Dr. Christopher-Stine to consider the potential benefits of frequent finger use in slowing IBM progression. She suggests that the intense and regular use of finger muscles by guitarists like Frampton might contribute to delaying muscle weakness, potentially offering insights for maintaining dexterity in IBM patients. She has even begun recommending guitar or piano lessons to patients.
Frampton also emphasizes the importance of exercise in managing his condition. He maintains a rigorous exercise routine six days a week, incorporating cardio and strength training to maintain function and prevent falls. He believes staying active is crucial in managing IBM symptoms. While neurologists agree on the benefits of exercise, they recommend moderate, consistent activity and caution against overexertion, which could potentially harm muscle tissue.
Advocacy and Research Efforts
Facing a progressive disease, Peter Frampton has channeled his energy into performing and raising awareness for IBM research. He launched farewell concerts and publicly announced his diagnosis in 2019 to maximize his performing years while able. He established the Peter Frampton Myositis Research Fund at Johns Hopkins, directing proceeds from his tours and merchandise to support research. His efforts have raised significant funds and drawn attention to IBM from both the public and fellow artists.
Frampton sees his advocacy as a new calling, committed to raising awareness and funds for IBM research. He participated in a clinical trial for pioglitazone, a diabetes drug being investigated for its potential to improve mitochondrial function in IBM patients. Even if this specific trial does not yield a cure, Frampton hopes his participation will contribute to the development of effective treatments for future generations.
Peter Frampton’s openness about his condition has had a profound impact, providing a recognizable face to a rare disease. As Dr. Conrad C. Weihl notes, “Having a figurehead for this disease is important,” comparing Frampton’s role to Michael J. Fox for Parkinson’s and Christopher Reeve for spinal cord injury. Frampton’s advocacy helps to build community, raise public awareness, and facilitate research by encouraging patient participation in clinical trials. His willingness to share his journey has already helped others recognize their own symptoms and seek diagnosis, as exemplified by a concert attendee who self-diagnosed IBM based on Frampton’s description of the condition on television.
Peter Frampton’s story is one of musical talent, resilience, and advocacy. Despite facing the challenges of Inclusion Body Myositis, he continues to perform, create music, and champion research efforts. His journey not only sheds light on IBM but also inspires with his unwavering spirit and dedication to making a difference. For those interested in learning more about IBM research or contributing to the cause, resources are available at clinicaltrials.gov under the search term “inclusion body myositis.”
Research by Thak Ka from the Noun Project
