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10 Celebrities with ME/CFS

  [ 187 votes ]   [ 11 Comments ]
By Erica Verrillo • www.ProHealth.com • July 16, 2014


10 Celebrities with ME/CFS
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" 

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 & NobleKobo 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).



Please Discuss This Article:   Post a Comment 

One more celeb
Posted by: DJ_Mike
Jul 16, 2014
Not to forget(forer)German soccer-star Olaf Bodden.
Not an American, but a great ME/CFS-"ambassador" in Europe, too!

http://en.wikipedia.org/wiki/Olaf_Bodden

http://www.youtube.com/watch?v=QbBg60kO0Pc

Reply Reply

Q&A w/ Laura Hillenbrand
Posted by: cfsboston
Jul 19, 2014
"An Author Escapes From Chronic Fatigue Syndrome"

http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/?_php=true&_type=blogs&_r=0

Rev. Bernard Hillenbrand (Laura's father) testified after me in Washington, DC. He starts @ Minute 10.

www.youtube.com/watch?v=ubjGm5dILpY&list=PL600CB038194B4593&index=11&feature=plpp_video/
Reply Reply

 
sorry, typo
Posted by: cfsboston
Jul 19, 2014
Sorry, typo, Rev. Bernard Hillenbrand starts @ Minute 5.

 


I found this article extremely annoying
Posted by: spiketheartist
Jul 21, 2014
I found this article extremely annoying.
1.Several of these people claim that they had CFS/ME and recovered. Recovery after having this disease for more than 5 years is so very unusual that it raises doubts that what they had was indeed CFS/ME. Even if they did, their stories raise false hopes in the majority of people who have CFS/ME and false expectations in the rest of the population.
2.All of these people were successful enough to afford treatments that are not available to the rest of us. Michelle Akers, for whom I have the greatest respect, managed to keep on playing soccer because she could get intravenous fluids in the clubhouse during breaks in the action. The only way I can get even a saline drip is by waiting until I am in such bad shape that someone has to drive me to an emergency room. I can't afford experimental drugs and consider myself lucky to be able to afford essential pharmaceutical and natural remedies - many others with this disease cannot.
Celebrities can afford to hire people to handle cleaning their house, keeping them fed nutritiously, paying their bills, etc. These mundane but necessary tasks take a huge toll on the energy of normal people with CFS/ME who cannot afford that level of care.
3.Celebrities walk into a doctor's office and get attention paid to them. Normal people walk into a doctor's office complaining of fatigue and get told that reduced energy is a normal effect of aging, or are advised to get some outside interests to take our mind off our self-preoccupation, etc. None of them had to wait 10 or more years before getting a correct diagnosis as so many of the rest of us do.
4. Some of these people are not very well known, but some are. They have been blessed enough to have rewarding careers that they can pursue from bed or have recovered sufficiently to have a halfway normal life or at least have had a very rewarding life before getting sick. WHY THE HELL DO WE NOT HEAR MORE FROM THEM AS ADVOCATES FOR RESEARCH AND EDUCATION FOR CFS/ME SO MORE OF US MIGHT RECOVER SOMEWHAT TOO?
These days, if one thinks of Parkinson's Disease, Michael J. Fox comes to mind immediately. Why is that not true of CFS/ME and someone like CHER, for example?
Reply Reply

 
what's available to most of us
Posted by: phone
Aug 5, 2014
I'm not sure about what you meant by annoying, but I think the point of the message is right on! I am 59 and have had Rheumatoid Arthritis for 42 years and Fibro, etc. for almost as long. Probably the hardest thing has been dealing with the medical field!!

 


Newbie
Posted by: joanambers
Jul 23, 2014
Dear Fellow CFS/ME-ers,
I'm brand new, just discovered "what I have" yesterday while searching something else.
I feel happy to see what's wrong, and that it's not in my head(altho I feel some of it DOES have to do w/my mental condition.)I'm a 10 year chemo-for breast cancer survivor, and am still having "chemo-brain"--only it's getting worse, not better.My memory, mental retention, and cognition are for the BIRDS.
I completely feel that my condition has to do with a serious life change--I lost all my $ in the crash of 08.Been losing more&more as I paid my rent.And now live in a senior HUD-supported building for seniors.Uh--talk about depression.I can barely get out of bed each morning, and drag myself out later and later.Which makes life hard since HUD is CONSTANTLY performing INSPECTIONS.Nightmare! "You must be dressed in street clothes"(Achtung?)
As I waited for my place in here, I started being sick: SUPREME fatigue.For "no reason." And as I could no longer take my half-mile walk for my exercize, I grew weaker & weaker.I have to walk on a cane, my balance is bad.Even my appetite, usually TEEN-AGED, is poor.Too weak to scarf food away as I did.And the buying, preparing, cleaning up is more&more like work.
I have studied many alternative suppliments, and take numerous ones, especially anti-oxidents, and global healers like turmeric.
Right now I've been having severe allergies since March."Tree pollen"?Hmph.I dont think it goes on thru summer.Around 3AM, after I've completed my day, I sit and read before sleep.And the sneezing starts.It goes on, loudly and uncomfortably, for about 15 minutes.And there is PLENTY of coughing& hacking from post-nasal drip.
I'm starting to look at Pinocchio, my sweet cat, w/suspicion.And this cant be, because since my children grew up, my companion animals have been my best pals and comfort.Dogs they were, but in HERE dogs must be no more than 25 lbs.(Pinoch =36 lbs himself.My Labs were..much bigger.)
Not only are my pets theraputic for me, but having a dog to walk is...very good for the health in itself.
I'm an artist, and great reader, and enjoy solitude very much.As long as I have a 4-footed pal to converse with.
The solitude in here is...very poor quality.It sounds a lot like an asylum going on outside my door, especially mornings.Which is big reason I've become more nocturnal than ever.
I was a "perfectly normal" girl, good in school, bright, healthy.I had college, married, had 2 kids, a happy, useful, very self-sufficient life.It's a good thing was not wealthy because now I know how to survive poor.
After my chemo, things started getting bad.Chemo brain leaves one very STUPID, w/great memory lapses.I have lots of joint pain, where I had some gently arthritis before, AFTER I was pretty RIDDLED-not just my knee, but most of my joints, and my arms&shoulders from side-sleeping.So there I was growing more&more vapid, more&more pained, more & m ore fatigued.The chemo was a sort which ix KNOWN to ruin heart function.So hello edema, and life in Crocs.Also worse & worse.
Next came the loss of my savings and the move here.I brought a lot of my things myself & became so exhausted I just couldnt do any more.I still cry for things I just walked away from(my KNITTING NEEDLES, hand-carved!My old dolls that my father brought me from Europe after WW2, and etc)And I still go to my huge closets to look for something I keep in there, to realize all that is gone-in my OTHER(real) life.
All this makes me very very tired(depression), and makes my back & joints hurt.My FINGERS drop things, just open unbidden.It kills my back just to pick up Pinoch's bowl.

And the fear & nervousness of my situation gave me IBS.I felt sure that after having diarrhea for many months, I was very short of nutriants.I lived on Immodium, the only med I took.It let me keep my food, but after some time totally dried me up.I felt I was dying of thirst always.

And each "morning" when I woke up, I truely felt I was sick & dying(and would rather than face another day here.)I went from a very healthy, happy person w/a touch of arthritis, to a crippled, miserable, exhausted old woman.

Since having cancer, I refused ever to eat meat or dairy that isnt organic.I shun GMO food.I (didnt) eat sugar, altho now I crave ice cream.I drink a good amount of water-need it to wash all these suppliments down.
I do VERY badly if I dont get 8 hours sleep.My sleep is of poor quality-bad dreams, pain..
If anyone cares to discuss herbal suppliments, I'd love to.If anyone has any advice, I'd love to read it.I have NO IDEA how to manage this sickness and would welcome hearing from you.
I have a very wonderful doctor, who HEARS and CARES and doesnt force me to take meds or psychotropics.(I havent seen her for over a year--too "weak" to go there.)All my bloodwork is always very good.I have no idea WHY-I sure feel ANYTHING but healthy.If only there was a REASON, something that could be treated...
Thank you, it is VERY good to be among you.I wish everyone health and happiness(or maybe they're one&the same.)
Joan
Reply Reply

 
@joanambers
Posted by: JohnBit
Jul 27, 2014
Hi Joan,

There are people on Facebook that can offer you a wealth of information and advice on what may help you. As a good place to start, please post what you posted here to a group called "The M.E Chat Room" https://www.facebook.com/groups/116996221671476/

Best regards,
John Buettner
(PWME since 1985)

 

 
my solution to 4 leggers
Posted by: phone
Aug 5, 2014
I had my doctor write a letter saying that I needed my dog for my health and well being. Now, I actually have a service dog who is a seizure alert dog. Now, no one can question. Of course, you can't just say your dog is a Service Dog, it really needs to be one. Hope this helps.

 


I Agree!
Posted by: karenkb
Aug 2, 2014
I so agree. It's hard enough to get seen but then EVEN with the docs that know ME/CFS is REAL you can't get an appointment. I saw Klimas in June. I was told they would call me for a follow up appointment to discuss bloodwork. No calls for 6 weeks so I called her office. The first they can talk to me is October---- for JUNE bloodwork!! No celebrity gets treated like that. AND this is for a doctor known for her work in this illness!
It's not realistic to think any of us "regular" people will be attended to and treated well. And seriously, how do we know these people did not just have adrenal exhaustion or something such as that? I have been ill 19 years and I don't think it's going to "go away" and I will become well again. Not that I am negative but I am realistic.
Reply Reply

famous people who have ME/CFS/FM
Posted by: mschutz
Aug 18, 2014
Please help us!!! All of the people who live with these dibilitating illnesses desperately need a well known spokes person. The CDC allotted ZERO dollars for 2014 for research!!!
We need to have our voices heard. Please speak out to inform the public how devestating these illnesses are and help us raise money for research. Thank you all.
Myra Schutz mschutz@bellsouth.net
Reply Reply

Singing From the Same Hymn Sheet.
Posted by: MamaChill
Aug 28, 2014
Hi I just want start by correcting a few of the assumptions on this feed, the same kind of assumptions ignorant promotion seeking journalists make. Even though it's undeniably wrong, I get why they do it,because they want to further their careers by whatever means and without conscience to what their often false and misleading words do to the M.E community as a group and more importantly as individuals. But I find it sad that there are those in the M.E community so quick to judge and make assumptions about another.
I'm one of the more unknown ones in this article & certainly dont have the finance and glitz lifestyle that some of the others have, in fact I'm too sick with M.E to work. I get the anger and frustration that you feel, I feel it too, every single day just as i have for the last 24 yrs. But those not bed-bound still have choices,abeit limited but choices nonetheless. Whenever i have a glimpse of energy, wether it be 20 mins, an hour or a day,rather than use it to enjoy a rare cappuccino with friends,or a simple soak in the bath, I use it to publicise, & raise awareness of this devastating illness and funds for the M.E charity Invest In ME. via a music artist facade Mama Chill, thats my choice and how i choose to use whatever little energy i have as and when. By focusing that smidgen of energy its allowed me to achieve quite alot,Regular mainstream radio play. radio interviews, magazine & newspaper articles,etc all worked around my limitations, and for every platform i'm given, it allows more publicity to the cause. I get no special treatment as some of you refer, it took six years to get a diagnosis in which time was hell on earth as Doctors tried to make out I was going crazy. Once diagnosed nothing changed, I was, and still have been left to get on with it. I wait for doctors appointments just like you, I'm in the process of a two month wait on a hospital appointment, because the increasing exhaustion means i dont even have enough energy to breath half the time and my legs buckle. As for the Celebrities with M.E that you see all the time, it may not actually be their fault its not advertisesd everywhere. I manage myself and decided from the off to be honest and tell the world about it in the hope it would help, but these other people have large management teams and contracts might mean they are not allowed to talk about it. It;s sadly a fickle world and I've found the US worse than the UK for not wanting to talk about illness, its a big no no in the entertainment world, in most cases if it comes out that you're ill, all work dries up and nobody wants to give you the time of day, it shouldn't be like that but it is , I've done a number of US interviews, told them all about M.E the charity etc but when the articles printed theres absolutely nothing there, it's as if they've completely wiped any sign of illness off the radar. That's why educating and raising awareness is so important, we need the media to get it, the journalists, the producers, the directors then maybe "Celebrities" would feel safe about coming forward, but what we cant do is just tar everyone with the same brush with misjudgments and assumptions, those of us with M.E know only too well how that feels so the least we can do is give others benefit of the doubt no matter who they are. Stay Blessed XXX
Reply Reply


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