Peter Frampton, the iconic singer and guitarist known for his electrifying performances and timeless hits like “Show Me the Way,” has been captivating audiences for decades. However, in recent years, questions have arisen about his health, prompting fans and media to ask: what’s wrong with Peter Frampton? The answer is Inclusion Body Myositis (IBM), a rare and progressive neuromuscular disorder that Frampton is facing with courage and determination. This article delves into Frampton’s journey with IBM, exploring the symptoms, diagnosis, and his inspiring efforts to raise awareness and support research for this debilitating condition.
Peter Frampton performing on stage, showcasing his enduring passion for music despite his health challenges.
The Onset: Recognizing the Subtle Signs of IBM
For Peter Frampton, the first inkling that something was amiss emerged subtly a decade ago during a hiking trip with his son, Julian, in Big Sur, California. At the age of 60, Frampton, accustomed to an active life, noticed an unusual fatigue. “It was a father-son rustic weekend,” Frampton remembers, recalling their time jamming with guitars and hiking. It was during a climb that he realized his son, Julian, was effortlessly scaling the trail while he lagged significantly behind. “When I got to the top, I looked at him and said, ‘You know, Julian, I’m finding this more difficult than usual.'”
Initially, Frampton attributed his weariness to the natural effects of aging and the physical demands of a long and illustrious career. His journey had been filled with the energy of touring with renowned bands like the Herd and Humble Pie, collaborating with music giants such as George Harrison and David Bowie, and consistently performing at a high level. He had even earned a Grammy Award in 2006 for his instrumental album Fingerprints. The thought of a serious underlying condition was far from his mind.
However, the subtle signs persisted and gradually became more pronounced. A few years after the Big Sur hike, Frampton found himself struggling to run while playing Frisbee backstage, an activity that was once effortless. For two years, he dismissed the growing sense that something was not right. Then, in 2015, a series of onstage falls – two within three weeks – served as a stark wake-up call. “I got up and we all laughed, but it was humiliating,” he admits, acknowledging the sobering realization that these incidents were more than just clumsiness.
These falls prompted Frampton to seek medical advice. He scheduled a checkup with his primary care physician in Nashville, where he had recently returned to after living in Ohio. His doctor immediately noticed a significant ten-pound weight loss since their last meeting and recommended further investigation. “He thought we should look into it,” Frampton says, expressing gratitude for his doctor’s attentiveness. “Thank goodness he did.”
Diagnosis: Unveiling Inclusion Body Myositis (IBM)
Referred to a neurologist, Peter Frampton underwent a series of tests that pointed towards a neuromuscular issue. During the examination, the neurologist asked Frampton to make a tight fist. Despite his best effort, the doctor could easily pry his fingers open, revealing a weakness in his hand muscles. Another test involved jumping on each leg ten times. Frampton managed ten jumps on his right leg without difficulty, but could only manage four on his left, highlighting an asymmetry in his leg strength.
Following laboratory tests, the neurologist delivered the diagnosis. Initially, Amyotrophic Lateral Sclerosis (ALS), a severe and fatal neuromuscular disease, was considered. “But you don’t have ALS,” the doctor clarified. “You have IBM [inclusion body myositis].” While both ALS and IBM are progressive neuromuscular disorders, a critical difference is that IBM is not considered fatal, although it significantly impacts quality of life. Further tests, including a muscle biopsy, confirmed the diagnosis of Inclusion Body Myositis.
Peter Frampton in his element, performing with passion and connecting with his audience, a testament to his resilience in the face of IBM.
Understanding IBM: A Rare and Debilitating Condition
Inclusion Body Myositis (IBM) is a rare condition characterized by progressive muscle weakness and atrophy. Like ALS, IBM falls under the umbrella of neuromuscular disorders, but its progression is typically slower, and it is not considered a terminal illness. A key characteristic of IBM is its asymmetric pattern of muscle weakness, often affecting one side of the body more than the other, which explains why Frampton’s neurologist tested the strength and balance in each leg independently. The weight loss Frampton experienced was also attributed to muscle atrophy, a common symptom of IBM.
IBM commonly affects specific muscle groups, particularly the quadriceps, located in the front of the thighs. These muscles are crucial for stabilizing the knee and providing power for activities like walking uphill or climbing stairs. Weakness in the quadriceps can lead to falls, often prompting individuals to seek medical attention. Another group of muscles significantly impacted by IBM are the finger flexors, located in the forearms. These muscles are essential for finger dexterity and fine motor movements. “That’s not good for a guitarist,” notes Dr. Yadollah Harati, a neurology professor and neuromuscular specialist at Baylor College of Medicine. Everyday tasks requiring grip and finger strength, such as turning keys, using tools, handling utensils, or opening doors, become increasingly challenging.
Swallowing difficulties, known as dysphagia, can develop in about a third of IBM patients, although Frampton has not experienced this symptom. Currently, there is no cure or effective treatment for IBM, aside from surgical interventions to address swallowing problems in some cases. “Ultimately, it becomes debilitating,” Dr. Harati emphasizes, highlighting the progressive nature of the disease.
IBM is considered a rare disease, estimated to affect around 30,000 people in the United States. However, Dr. Harati believes the actual prevalence might be higher, suggesting it is “much more common than what we identify.” The onset of IBM typically occurs after the age of 50, and it is more prevalent in men, who are two to three times more likely to be diagnosed than women. The symptoms of IBM can often be misattributed to normal aging, arthritis, ALS, or other muscle disorders, leading to diagnostic delays. It often takes five to eight years to receive an accurate IBM diagnosis. “People think becoming significantly weaker with age is normal,” Frampton points out. “It’s not.”
Neurologists often use the term sporadic inclusion body myositis (sIBM) to differentiate it from familial inclusion body myositis (fIBM), a much rarer genetic variant. In most contexts, “IBM” is used synonymously with sIBM. The exact cause of IBM remains elusive 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. The inflammatory aspect suggests an autoimmune component, where the body’s immune system mistakenly attacks its own muscle tissue. However, typical autoimmune treatments like corticosteroids and immunosuppressants have limited effectiveness against IBM. Emerging research points towards a potential link between sIBM and mitochondrial dysfunction. Mitochondria are the energy-producing units within cells, and their impairment may be a key factor in IBM. Dr. Bruce H. Cohen, director of the brain, muscle, and mitochondrial research program at the Children’s Hospital Medical Center of Akron, suggests that mitochondrial issues might be a primary cause of sIBM, although FDA-approved therapies targeting mitochondrial disease are not yet available.
Peter Frampton’s Response: Resilience and Advocacy
Peter Frampton’s life has been marked by both triumphs and tribulations. He has navigated career highs and lows, personal challenges including past struggles with alcohol, and a serious car accident in his younger years. “I knock the dust off and get myself back up,” Frampton states, reflecting his resilient nature. Now sober and facing IBM, he maintains a pragmatic and positive outlook. “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 sought expert care from Dr. Lisa Christopher-Stine, director of the Johns Hopkins Myositis Center. Dr. Christopher-Stine initially anticipated dealing with a demanding rock star patient, but her experience was quite the opposite. “He was the opposite,” she recalls. “He was disarming, genuine, charming, and a lovely human being from the first moment. It took about a minute to feel like I was speaking to an old friend.”
Clinically, Frampton presented as a typical IBM patient – male and over 50. However, Dr. Christopher-Stine made a remarkable observation: Frampton’s guitar playing ability remained exceptional. “I assumed everybody’s finger flexors got weak,” she admits. “But his ability to work them was preserved.”
Peter Frampton sharing the stage with his son Julian, demonstrating the importance of family and support in facing life’s challenges.
Music, Exercise, and Hope: Managing IBM
Despite experiencing some hand weakness, Peter Frampton’s guitar playing has not been significantly impaired by IBM. “I can’t lift things over my head and wouldn’t be able to put stuff in the overhead compartment on airplanes,” he explains, describing the limitations five years post-diagnosis. “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. “He brought to my attention how little we use our fingers the way he does,” she says. While acknowledging the lack of long-term data and individual variability in IBM progression, she notes Frampton as one of her slowest-progressing IBM patients. The intensive use of his finger muscles through guitar playing might be a factor in delaying muscle weakness progression, potentially offering insights into maintaining fine motor skills in IBM patients. Dr. Christopher-Stine has even begun suggesting guitar or piano lessons to her IBM patients.
Beyond music, Frampton emphasizes the importance of exercise in managing his condition. He maintains a rigorous exercise regimen six days a week, incorporating cardio on a treadmill or stationary bike and strength exercises like lunges to prevent falls. When touring, he worked with a trainer, and now utilizes Zoom sessions and home equipment to continue his routine. “My stairs are my stair climber!” he quips, highlighting his proactive approach to fitness.
Neurologists generally recognize the benefits of exercise for IBM patients, although specific recommendations vary. Dr. Conrad C. Weihl, a neurology professor at Washington University School of Medicine, notes research suggesting that “patients who are more functional and have better outcomes after having the disease a long time are more likely to have exercised.” While acknowledging the correlation may not definitively prove causation, he advises all his IBM patients to exercise. However, he also cautions against overly structured or strenuous programs, noting that “patients given an exercise program by a physical therapist don’t do as well as those who just do what they enjoy.” He recommends finding sustainable and enjoyable activities like pickleball or tai chi, while prioritizing safety to prevent falls or injuries.
Dr. Harati also emphasizes moderation in exercise, warning against overexertion. “The goal is to keep existing muscle alive and working with consistent, moderate activity,” he advises. Strenuous exercise could potentially worsen muscle damage or trigger adverse immune responses. “Going to the gym and lifting heavy weights will not beat the disease,” Dr. Harati cautions. “It could even be detrimental.”
Rockin’ for Research: Frampton’s Advocacy and Legacy
Facing a progressive disease that could eventually curtail his performing career, Peter Frampton made the conscious decision to maximize his time on stage while he is still able. “I do not want to be that guy up on stage who cannot play what he wants to play,” he asserts. “I only want to do it if I can enjoy myself, and that means I’ve got an audience that’s enjoying it too.”
After another fall in early 2019, Frampton decided to embark on a farewell tour, launching a 51-date US tour in the summer and fall of 2019. He also publicly announced his IBM diagnosis in a February 2019 interview on CBS This Morning. “In every interview for the tour after that, IBM would be mentioned,” Frampton recounts. “Everyone was aware.”
Driven by a desire to contribute to IBM research, Frampton established the Peter Frampton Myositis Research Fund at Johns Hopkins. A dollar from each ticket sold on his US tour, along with proceeds from merchandise sales, was donated to the fund. Shriners Hospitals for Children also contributed a portion of sales from one of his records. Generous donations from fellow artists and promoters further bolstered the fund. The farewell tour ultimately raised over $275,000 for IBM research, as confirmed by Dr. Christopher-Stine.
Frampton now views IBM advocacy as a significant part of his life’s work. “I will always be raising awareness and money for my research fund,” he pledges. The funds will support crucial clinical trials, including one Frampton himself enrolled in to investigate the effects of the diabetes drug pioglitazone on IBM. Although the COVID-19 pandemic initially delayed his participation in the trial, his doctors have made the drug accessible to him.
While acknowledging the uncertainty of pioglitazone’s effectiveness, Frampton is committed to contributing to research progress. “But if I can’t be cured, I will have done my little part to help scientists come up with the right drug and make sure future generations won’t have to deal with this disease,” he states. Pre-pandemic plans to speak at medical conferences and connect with other IBM patients are currently on hold. A planned European farewell tour has also been postponed. However, Frampton remains active, engaging in recording projects for charitable causes, such as “Ringo’s Big Birthday Show.”
On tour, Frampton discreetly managed his symptoms, wearing a leg brace under his clothing and only disclosing his IBM diagnosis towards the end of his performances. He describes the overwhelming support from his audiences: “Then I’d say, ‘You know I have health issues, but all I can feel is loving warmth coming from you as if you’re trying to hold me up.’ It was a phenomenal feeling.”
Dr. Weihl underscores the importance of celebrity advocacy in rare diseases. “Having a figurehead for this disease is important,” he states, referencing Michael J. Fox’s advocacy for Parkinson’s and Christopher Reeve’s for spinal cord injury. Frampton’s visibility helps to build community, facilitate understanding of IBM, and encourage participation in research. “We can only gain knowledge from the patients we know about,” Dr. Weihl emphasizes. “That’s why the awareness that Peter Frampton is bringing right now is so important.”
Frampton’s concerts became opportunities for connection and support. He invited audience members with IBM to meet him backstage. One man shared a poignant story of being undiagnosed for years until he saw Frampton’s CBS interview and recognized his own symptoms. “Hon, Frampton just diagnosed me,” the man told his wife.
Frampton’s memoir, Do You Feel Like I Do?, was released in late October. Between 2018 and 2019, he and his band recorded three albums, including All Blues, which topped the Billboard blues chart for 15 weeks. He has continued recording new music, including an instrumental album and a solo project. “I have no plans for stopping,” he affirms.
Reflecting on his recent recording of the blues song “Going Down Slow,” Frampton notes its poignant resonance with his current health journey. The lyrics, “I have had my fun if I don’t get well no more/You know my health is now fading and I’m going down slow,” took on a deeper meaning for him and his band. “It was as if I could hear their thoughts and mine,” he says. “I couldn’t help but ponder at that point why we were recording so much so quickly. I had a little moment with that one.”
Research by Thak Ka from the Noun Project
The State of IBM Research: Hope on the Horizon
Despite the current lack of effective treatments for Inclusion Body Myositis, the field of IBM research is experiencing a period of significant progress and optimism. “But this is an exciting period in IBM research, and Peter Frampton is increasing awareness just at a time when I believe therapies will emerge,” states Dr. Conrad C. Weihl.
One promising area of research focuses on cytotoxic T cells, also known as killer cells. These immune cells are responsible for destroying infected or abnormal cells in the body. In autoimmune diseases like IBM, cytotoxic T cells mistakenly attack healthy muscle tissue. Dr. Steven A. Greenberg, a neurology professor at Harvard Medical School, explains, “One potential approach to treating IBM might be targeting the specific population of T cells involved.” Researchers are exploring therapies that selectively target and eliminate these harmful cytotoxic T cells without broadly suppressing the immune system. Clinical trials are underway for drugs designed to target these specific T cells.
Other ongoing and proposed trials are re-examining drugs that showed limited success in earlier studies, such as arimoclomol and rapamycin. Arimoclomol aims to prevent the abnormal protein clumping associated with muscle damage in IBM, while rapamycin is an immunosuppressant. Bimagrumab, initially promising for its muscle-sparing potential, unfortunately did not meet expectations in clinical trials, highlighting the complexities of IBM research and treatment development. “Either the drug is ineffective or we don’t have a good grasp of the right end points to study,” Dr. Christopher-Stine comments.
Peter Frampton’s participation in a clinical trial for pioglitazone, a diabetes medication, reflects another avenue of research. Pioglitazone aims to enhance mitochondrial function, which is impaired in IBM patients. “This is a pilot study to see if we can detect beneficial signals in blood tests or muscle biopsies,” Dr. Christopher-Stine explains. Even if pioglitazone itself is not the ultimate answer, it could provide valuable insights into pathways for developing more targeted therapies, such as those that enhance PGC-1, a key regulator of energy metabolism in muscle cells. Dr. Bruce H. Cohen notes that exercise is another potent way to boost PGC-1 levels, underscoring the multifaceted approach to managing IBM. Unlocking the complexities of IBM may also yield broader benefits for understanding and treating other conditions like diabetes, Parkinson’s disease, dementia, and even cancer.
The rarity of IBM presents challenges for researchers in recruiting sufficient participants for clinical trials. Dr. Weihl emphasizes the need to better understand disease progression and patient-defined meaningful outcomes. Information on current IBM clinical trials can be found at clinicaltrials.gov by searching for “inclusion body myositis.”
This article aimed to answer the question “what’s wrong with Peter Frampton?” by detailing his diagnosis and journey with Inclusion Body Myositis. Peter Frampton’s story is one of resilience, advocacy, and hope, inspiring both those living with IBM and the broader community. His willingness to share his experience has significantly raised awareness of this rare condition and fueled critical research efforts that offer hope for future treatments.
