By Erica Verrillo
Of the 17 to 24 million people wordwide who have ME/CFS, a number are bound to be celebrities. Some have made their struggles with ME/CFS known to the public, while others – usually for the sake of their careers – have preferred to keep quiet.
Here are ten contemporary celebrities who have stepped forward and not only spoken about the illness, but raised funds for research, started forums, written books, made films, and done their best to dispel the notion that ME/CFS is “all in their heads.”
We applaud the efforts of these courageous individuals.
Laura Hillenbrand, Author – “Living vicariously”
Laura Hillenbrand is the author of the best-selling books Seabiscuit and Unbroken. She contracted ME/CFS while she a student at Kenyon College in Gambier, Ohio. (She was forced to leave school before graduation.) Hillenbrand described the onset and early years of her illness in an essay, A Sudden Illness, published in the New Yorker. Hillenbrand freely acknowledged the irony of writing about feats of physical prowess while being unable to leave her house. In an interview by the Washington Post, Hillenbrand said, “I’m looking for a way out of here. I can’t have it physically, so I’m going to have it intellectually. It was a beautiful thing to ride Seabiscuit in my imagination. And it’s just fantastic to be there alongside Louie as he’s breaking the NCAA mile record. People at these vigorous moments in their lives – it’s my way of living vicariously.”
Keith Jarrett, Musician – “Playing the heart of things”
Keith Jarrett is one of America’s most famed jazz musicians. Although he is best known as a pianist, he also plays harpsichord, clavichord, organ, soprano saxophone, drums, and a number of other instruments. Jarrett also composes classical music, and in 2004, was awarded the Léonie Sonning Music Prize, an award which has been given to only one other jazz musician – Miles Davis. Jarrett contracted ME/CFS in 1996, and for a few years he could not even listen to music, let alone play it. In an interview with NPR’s Terry Gross, Jarrett said, “I didn’t know if I would ever play again. So when I was able to sit at the piano without being sick and play a little bit, there was a way of dealing with economy that is way past anything I can imagine doing when I’m well. It’s hard to describe. It’s almost like the disease made it possible to deal with the skeleton instead of the surface, you know – just the heart of things, because there was no energy for more than that.”
Michelle Akers, Athlete “Fought to the very end”
Michelle Akers is a former Olympic soccer star who played in over 130 international matches spanning15 years. She played in the 1991 and 1999 Women’s World Cup for the United States, and won the Golden Boot as the top scorer in the 1991 tournament. She is a member of the National Soccer Hall of Fame and was named FIFA Female Player of the Century. Akers played until she found herself “at the end – physically and mentally – with a body ready for a M*A*S*H unit … but”, she said, “ I have huge peace in knowing I fought to the very end and have nothing else to give.” (Soccer Times)
Blake Edwards, Film Producer/Director/Screenwriter – “Comedy saved me”
Blake Edwards started his career as an actor in silent films. He is best known for the Pink Panther movie series, Breakfast at Tiffany’s, and Days of Wine and Roses. In 2004, he received an Honorary Academy Award in recognition of his writing and directing. Edwards described his 15-year struggle with ME/CFS in the documentary, I Remember Me (2000). In the film, he described the onset of ME/CFS as the flu that never went away. “What the hell is this?” Edwards asked. “The desperation was enormous.” Edwards eventually turned to writing. “[comedy] saved me from this damn thing.” Blake Edwards died of complications of pneumonia on December 15, 2010.
Randy Newman, Composer/Singer/Pianist – “The worst part is in your brain”
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Randy Newman has earned 17 Oscar nominations, and won an Oscar in 2002 for the song “If I Didn’t Have You” from Monster’s, Inc. He is best known for his film scores, which include Ragtime, Awakenings, The Natural, James and the Giant Peach, Cats Don’t Dance, Meet the Parents, Cold Turkey, Seabiscuit and The Princess and the Frog. Newman contracted ME/CFS in the 1980s. “I couldn’t get up a couple of steps without getting out of breath,” he said, in a People interview. “But the worst part is in your brain. You just can’t think of anything that you look forward to doing. Nothing looks good.”
Mama Chill, Rap Artist – “Focusing on what I can do”
Mama Chill (born Stacy Hart) is a British rap artist influenced by “80’s Old skool American Rap/Hip hop with every other genre mixed in.” She has composed songs about ME, and donates all profits from her “Runnin on Empty” store to the British charity, Invest in ME. In an interview with the Watford Observer, she talks about her 22-year struggle with ME. “I am limited by my illness. I can’t gig and I get exhausted going to the studio. But I try to focus on what I can do, rather than what I can’t,” she said. “I wrote my songs when I was bed bound. I thought if I’m going to come back from my illness, I’m going to come back with rap music, something that I always wanted to do.”
Cher, Actress/Singer – “Devastating for me”
Cher (born Cherilyn Sarkisian) is an American singer and actress nicknamed the “Goddess of Pop.” Cher became famous in the 1960s as half of the duo Sonny & Cher. Later she proved her acting talent in Moonstruck, Mask, Suspect, and Silkwood. Cher has won an Academy Award, a Grammy Award, an Emmy Award, three Golden Globe Awards, and the Best Actress Award at the Cannes Film Festival. Cher was diagnosed with CEBV (chronic Epstein-Barr virus) and reputedly went to Brussels, Belgium for treatment and recovered. When asked in a BBC interview if she thought the illness was psychosomatic, Cher replied, “My experience was that it was really a physical illness — but it does make you depressed as well … Boy, it was devastating for me.”
John Rutter, Composer – “This was real”
John Rutter is a British composer of choral works. His compositions include Christmas carols, anthems, and larger works such as Gloria, Requiem, Magnificat and Mass for the Children. NBC’s Today Show called him “the world’s greatest living composer and conductor of choral music.” From 1985 to 1992, Rutter suffered from severe ME and stopped taking on commissions, as he could not meet deadlines. Rutter has been outspoken about his experience with ME, and does not hesitate to write letters countering the notion that the disease is “all in your head.” In a letter to the Daily Mail he says, “Like malaria, it cycles on and off, and after an attack, which might last a few days, I felt terrible. I would have a week or two feeling OK, then the cycle would begin again. I’m a professional musician, and we tend not to advertise our ailments any more than journalists do, but this was real.”
Michael Crawford, Actor/Singer – “Smelling the Roses”
British actor Michael Crawford has received great critical acclaim and won numerous awards during his career, which covers radio, television, film, and stagework on both London’s West End and on Broadway in New York City. He is best known for playing the hapless Frank Spencer in the popular 1970s British sitcom, Some Mothers Do ‘Ave ‘Em. He played the title role in The Phantom of the Opera. Crawford contracted ME in 2004. “I’d be totally exhausted by mid-afternoon, and I could barely climb the stairs at home, ” he said. “I knew something was wrong, but I had no idea what. What I thought had been flu turned into a physical meltdown. I went for all sorts of brain and body scans until ME was finally diagnosed.” After seven years, Crawford returned to the stage. “If anyone had told me one day I’d be back in London’s West End I wouldn’t have thought it possible. I thought my career had come to an end.” Crawford attributes his recovery to his move to New Zealand. “I decided to relocate from Britain to get healthy and smell the roses.”
Leigh Hatcher, Journalist/Author – “Not crazy”
Leigh Hatcher is one of Australia’s best-known television journalists. He was bureau chief for the Macquarie Radio Network in the Canberra Press Gallery, and has worked at various radio stations including 2CA in Canberra and 5DN in Adelaide. He was forced out of work for more than two years after contracting ME/CFS. Hatcher wrote about the experience in his best-selling book, I’m Not Crazy, I’m Just A Little Unwell. He also founded the online forum, Not Crazy, which was intended to help ME/CFS sufferers to come together to share and encourage each other. “People [with ME],” Hatcher says, “are not crazy.”
Erica Verrillo is ProHealth’s expert editor for the ME/CFS HealthWatch and Natural Wellness newsletters. She is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, available as an electronic book on Amazon,Barnes & Noble, Kobo and Payhip (PDF file). Her website,CFSTreatmentGuide.com, provides practical resources for patients with ME/CFS. She also writes a blog, Onward Through the Fog, with up-to-date news and information about the illness, as well as the full text of CFS: A Treatment Guide, 1st Edition (available in translation).