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Inclusion Body Myositis: Learning from Musician Peter Frampton

Because of Peter Frampton, rheumatologist Lisa Christopher-Stine has changed her advice for patients with IBM.


Because of Peter Frampton, rheumatologist Lisa Christopher-Stine has changed her advice for patients with IBM.

After all these years, legendary musician Peter Frampton sounds just as good as ever. In fact (although he might disagree), to those who have heard him live or listened to some of his newer recordings, this beloved guitarist sounds even better than he did back in the days of his landmark 1976 album, Frampton Comes Alive! or Fingerprints, for which he won a Grammy in 2006.

This is remarkable for two reasons: first, he has an autoimmune disease called inclusion body myositis (IBM) that affects his muscles. And second: although he has experienced some weakness and loss of function in larger muscles, his fingers still work great!

Frampton’s finger dexterity was not at all what his doctor, rheumatologist Lisa Christopher-Stine, M.D., Director of the Johns Hopkins Myositis Center, expected to find; then again, neither was Frampton himself.

Before his first appointment, Christopher-Stine says, she wondered whether he would be one of those high maintenance, dark sunglasses-wearing celebrities. He wasn’t. “He didn’t have an entourage; he’s just a very down-to-earth, lovely person.” He is also consistently upbeat, with a can-do attitude, great sense of humor and a hearty laugh. He has IBM, but IBM doesn’t have him.

“Sure, I have my darker moments,” Frampton says. “But I have so much to be thankful for. We all have our battles; this is mine, but everybody has something. You walk down the street, and you’ve no idea what the person who just passed you is going through. This has opened me up to be more empathetic about other people’s battles. Yes, mine is serious, but there are many worse ones out there.”

Patient and Teacher

IBM is not the same in every patient, Christopher-Stine notes, “and it’s unclear why certain muscle groups are targeted more than others.” The finger flexor muscles are often specifically affected in IBM and for that first visit, Christopher-Stine’s immediate concern was how badly affected they would be in the renowned guitarist. She was in for a surprise. His finger dexterity, built over decades of disciplined practice and virtuoso performance, was extraordinarily well preserved, she says.

“I have noticed some changes,” says Frampton. “They’re small. I am very, very slowly losing power in my hands, so that’s a little disturbing. But so far, because I’ve been playing all my life, as soon as I take up a guitar, they tend to know what to do.”

Because of Peter Frampton, Christopher-Stine has changed her advice for patients with IBM. “In many ways, he’s been a teacher as much as a patient,” she says. “He taught me how important exercise and recurrent use of one’s fingers are. Remarkably, his left hand, which plays the frets, is even stronger than his right hand, which is his dominant hand! I started recommending to other patients to get a guitar or piano – just start playing. I don’t know that we can undo damage that was already there (in other patients), and it is unlikely that people who don’t play at that high level would get the same benefit. But he has proven that there is a benefit in isolating our finger flexors individually; most people don’t do that. We tend to concentrate on grip testing and strengthening rather than on individual finger muscles.”

Exercise is Non-Negotiable

In addition to practicing and playing guitar, Frampton does a one-hour workout six days a week. This is nonnegotiable; even the pandemic and gym shutdowns haven’t stopped him. “I’m very lucky; I do not have the swallowing problem (these muscles can be affected in IBM),” he says. With the help of a personal trainer (online during the pandemic), he exercises “every muscle that is affected,” in his case, “the muscles in the legs, the arms and the hands. We mix it up: legs and core, then core and arms another day, so it’s always different.

“I am aware of the very slow decline; stairs are a real problem for me. We concentrate on fall prevention: that’s the way I found I out I had this, the reason I went to a neurologist in the first place. I fell twice on stage within a month. I had no idea what was going on. I knew I was losing power in my legs, but I really didn’t have a clue as to what was going on. I actually thought my tight jeans were impeding my walking! The mind is a terrible thing!”

That was six years ago. During a 10-day break in his concert schedule, Frampton went to a neurologist, who narrowed down the diagnosis to two possibilities. “He didn’t tell me until after he’d diagnosed me with IBM that the first one on his list was ALS (amyotrophic lateral sclerosis, also called Lou Gehrig's disease). Because it is so slow-moving, IBM is hard to diagnose.”

Giving Back

And because it is pretty rare, affecting maybe eight out of every one million Americans, IBM has not garnered huge research funding; neither has it been a big focus of drug development by pharmaceutical companies. Frampton is doing his best to change this, establishing the Peter Frampton Myositis Research Fund at Johns Hopkins to raise money for research.

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In February 2019, he went on “CBS This Morning” to announce the Fund and his 51-date U.S. Farewell Tour. “Each promotor donated a dollar from every ticket sale,” he says. “The Shriners teamed up with us,” selling copies of Frampton’s 2019 CD, All Blues. “I didn’t see any money from that CD: half the profit went to the Shriners, and half of it went to my fund at Johns Hopkins.” So far, the tour and CD sales have raised close to $300,000.

“The promotors had to do this themselves. They had to work out how many people were there, they had to write a check after every one of my concerts in different places, and they all sent in the money,” Frampton says. “In fact, in a couple places, they gave a huge check on top of that. People were just so behind the Fund and doing as much as possible.”

 ‘Symbol of Hope’

Since he went public with his diagnosis, “he’s become a symbol of hope,” says Christopher-Stine, who gets calls and letters from patients saying that Frampton has inspired them. Frampton makes time to talk to “other IBM’ers,” on the road and online. On the Farewell Tour, “I would do a VIP meet and greet at the end of each concert, usually about 40 to 50 people,” he says, “and if there were any IBM’ers, we left them until last, so I could spend more time with them.” He remembers one couple in particular:

“They didn’t say that he had IBM, they didn’t wait until the end, so we didn’t know. So I’m standing in between them, and I’m signing their stuff and getting ready to take a picture, and the wife says, ‘You diagnosed my husband.’ I said, ‘Excuse me?’ He was very quietly spoken, and he said, ‘I had been to I don’t know how many doctors. Nobody knew what I had, and nobody could help me. I watched you on CBS, and everything you said, all your symptoms, I ticked them off one at a time. I just yelled at my wife, ‘Hey, come in here! Frampton just diagnosed me! I’ve got IBM!’ He went to a neurologist, because that’s what I said to do, if you’ve any weakness in your leg muscles and no clue what it is.”

Frampton asked the man if he was exercising now, and the answer was, “’Every day.’ There was proof that I had actually helped someone by talking about it on TV.”

Inherited Resiliency

Christopher-Stine says of Frampton, “I feel so fortunate to know him. He is truly a remarkable human being.” Frampton says his positive attitude is inherited. “My kids say to me, ‘Dad, how come it’s always the little, tiny things that really bother you? When something big happens, good or bad, you take it in your stride.’ I don’t know, but I’m the problem solving optimist of the family. I got that from my parents. I was born five years after my dad came back from Germany in the second World War. I learnt so much from their stories.” His father fought in Europe and Africa. His mother survived the Blitz. Over time, “she got fed up with going to the bomb shelter in the basement, so she just stood out on the balcony and watched the bombs come down. Every day, they woke up and didn’t know if it would be their last.”

They were glad to be alive, and so is Frampton. “I just feel like, if I’m the face of IBM, then I think you’ve got the right person, because I never give up!”

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