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Famous (and sort of famous) ME/CFS sufferers

Discussion in 'General ME/CFS News' started by margib, Oct 26, 2009.

  1. caledonia

    caledonia

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    In my world of music, guitar players, etc. there is Ken Fischer of Trainwreck amplifiers http://www.trainwreck.com/ (unfortunately passed away in 2006 after being sick for 19 years), and also guitar player Ronnie Earl who is my favorite living guitar player - so full of soul, it's incredible. Ronnie started out playing blues, but has shifted into these jazzy/bluesy "healing" albums after getting sick.

    My favorite of these is Greatful Heart: Blues and Ballads http://www.amazon.com/Grateful-Heart-Ronnie-Earl-Broadcasters/dp/B0000004BM

    On the album Now My Soul, there is a bonus track where he talks about having CFS among other health problems. http://www.amazon.com/Now-My-Soul-R...=sr_1_1?ie=UTF8&s=music&qid=1263459737&sr=1-1

    He is still able to gig some, but stays in his local area.
  2. Marco

    Marco Old blackguard

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    Yep - cross her right off.

    She was quoted in the MEA mag as stating that when she was ill all she was able to do was sit in front of the TV all day. She doesn't appear to see the irony that her own government's Department of Work and Pensions considers that the ability to watch TV for one hour per day is evidence of having sufficient mental stamina to return to work full-time!
  3. starryeyes

    starryeyes Senior Member

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    I've read about Flea in a few different places. I probably saw it on other message boards over the years. I either once knew he was the bassist and forgot or just always mistakenly thought he was the drummer. Not sure. Lol

    CBS that was an amazing article. Thank you. I didn't know that Daryl Hall and Stevie Nicks have CFS.
  4. klutzo

    klutzo Senior Member

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    Daryl Hall has been quite vocal about the fact that he has Chronic Lyme, not CFIDS. He's been very helpful in getting more publicity for Lyme Disease.

    I saw an interview with Stevie Nicks in which she said she was bedridden for almost two years from CFS, but is recovered now. She did not go into detail about her recovery; very frustrating.

    I also read that LeAnn Rimes was bedridden by CFS for 2 years, but is also completely recovered. She was quite young when she got it, so this could be possible.

    I read that Cher still has CFS but tries to hide it. She supposedly has a bed put backstage at every concert she does, and a lot of elaborate dancing, backup singing and instrumental work is included at the end of many numbers to allow her to go back there and lie down for a few minutes before attempting another song. Of course, this could all be untrue, but I did not read any of this in the tabloids, so it may actually be true. I also heard that at the point when she became ill, her only income for that period was from ads for Bally's Gym, so she had to hide it in order to continue to be their spokesperson.

    Producer and husband of Julie Andrews, Blake Edwards was quite outspoken about having CFS and gave several parties at his home to raise money for CFS research. Hasn't he passed away? If so, I would love to know what was listed as the cause of death.
    ETA that Blake Edwards is not dead...I just checked. He is 87.

    klutzo
  5. _Kim_

    _Kim_ Guest

    Filipino Senator has CFS

    According to research of Senate records by GMANews.TV:

    Did the ME/CFS community know about this? How can we use Senator Santiago's influence to help our global cause?
  6. Koan

    Koan Be the change.

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    Wow!

    And, wow Kim, what a find!
  7. Dolphin

    Dolphin Senior Member

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    Some people might know about it as I highlighted it on Co-Cure before.
    But no harm highlighting it again.
    I don't think there are any patient groups there so she could really help people there.

    From doing some background reading on her, she is a formidable woman. Also clearly bright and a "doer" so not likely to be described as lazy.

    (Philippines) "Miriam: DOH must attend to chronic fatigue syndrome problem"
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0904E&L=CO-CURE&P=R2773

    This was something I tried to encourage at the time - I sent letters myself but I don't think any were published.

    Letter writing to the Philippines following the press release from Senator Miriam Defensor Santiago
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0905A&L=CO-CURE&P=R127
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes I knew about it. But I hadn't thought of it in a long time.

    Tina
  9. glenp

    glenp "and this too shall pass"

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    TY for posting thks Kim. Maybe soon some of our parliamentary members will unfortunately suffer from the illness also.
  10. alice1

    alice1 Senior Member

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    I'm in the film business and you may have seen some of my work.I'm far from famous but alot of people in the business know about me.
    My real name is Alberta Watson and you can look me up at IMBD.
    I became ill 23 years ago and at that time no one had heard of CFS/ME/CEBV. I've told producers and directors that I have this illness but I don't think any of them understood.Iit's very different today because of people like you on this board and the doctors who have finally spoken out and for the media who've reported.I thank all of you.
    For myself I'll know when the time is right to speak publicly but as I said I'm no star.
    Also illness is a very personal journey and some may just want to forget.
  11. Carrigon

    Carrigon Senior Member

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    The same one from The Keep and La Femme Nikita? If so, my favorites and glad to have you here and speaking out.

    I know of alot of famous people who hide it. They are scared that if they speak out, they won't get work. Producers want to know reliablility. They want to know that if you sign a contract for a movie, you can do that movie and work on that set for fifteen or more hours a day and train and all that. The actors are scared to say anything. Alot of them actually get labeled as druggies or difficult to work with, when in reality, they are too sick to come out of their trailers.

    I wish more famous people would speak out about it. The public tends to believe the famous more, that's just the way it is. If they see their favorite star saying how they can't work or get out of bed from this, they believe it alot more than if just their neighbor or friend says it.
  12. Misfit Toy

    Misfit Toy Senior Member

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    Flea from the Red Hot Chili Peppers has CFS? I never knew that. Love them and have for years. That's so weird. Cher never mentioned it much. She got better. But, with all of her money, that's what happens. People get better.
  13. Dolphin

    Dolphin Senior Member

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    No one much famous in Ireland

    We've a real shortage of recognisable people in Ireland. And I'm not just talking about internationally recognisable people.
    I have run the group and seen who has contacted. There are a few relatives of people - but generally these relatives weren't well known in themselvs. Kerry Hardie is a poet who is "out" but I hadn't heard of her but supposedly a few people had.

    When Esther Rantzen came out in 1996, she didn't an interview on Irish radio and it helped. Not sure how much of an asset she is these days having been LPed with her daughter.
  14. Dolphin

    Dolphin Senior Member

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    Cher

    It actually came up on a TV interview in Ireland in 1995. I presume the questons on these things (light Saturday night chat show where celebrities are on usually to promote something) are agreed in advance. Anyway she was quite forthcoming which seemed to be different to how she was in the US or that was the impression I picked up.

    The term, "Chronic Fatigue Syndrome", and I think few people in Ireland knew that term then - M.E. or "Yuppie Flu" were the terms. "Chronic Fatigue Syndrome" is used more now but M.E. is still better known.
  15. Carrigon

    Carrigon Senior Member

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    I had heard of Flea having it, but I never really kept up with it. There was someone else from a famous band, a drummer, I think, can't remember the story, but he had to drop out of the band he was so sick with CFIDS/ME and they went on without him and he was never heard from again. Alot of people who get it severe just disappear like that. Like what happened with Maren Jensen.

    Alot of people don't know that Maren Jensen, who was famous for modeling and her roles in the original Battlestar Galactica and a movie she did with Sharon Stone in the early 80's, Maren was one of the very first Hollywood actors to get hit with CFIDS/ME. She was never able to work again. She literally disappeared. Someone posted a bogus thing on wikipedia in the 90's that she had recovered and left Hollywood behind her. It wasn't true. She never recovered, she was never seen or heard from again. She literally disappeared from society. Maren wasn't into drugs and she loved acting and modeling. She loved her career and her friends. There was no way she would just up and disappear, and yet, after she got sick, that was it.
  16. Advocate

    Advocate Senior Member

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    Hi Alberta,

    Let's hope that the right time will be next year, when you and everyone else are on the way to recovery, thanks to the good research that is finally being done... :thumbsup:

    When I read your post I thought of a letter by a writer/researcher named Andrea Pring that appeared yesterday in Rapid Responses in the online BMJ. The letter, titled "I Cannot Work," contained a sentence I never expected to find in a medical journal: "I was beautiful, vibrant and ambitious."
  17. JPV

    JPV Senior Member

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    Interesting. I used to occasionally see Flea at a nutritionist's office here in Studio City, that I used to go to for my condition. Maybe he was there for the same reason. She never did do anything for me, except to take my money. I believe she had some legal troubles, a few years back, regarding illegal medical practices.

    I'm in the film industry too. Not famous to the public but well known in my field and to numerous other people in the industry. I have 3 Emmys and a dozen or so nominations for my work. Unlike you, I have never told anybody in the industry about my condition, for fear that it would effect potential employers confidence in hiring me.
  18. alice1

    alice1 Senior Member

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    Carrigon you're one of the few people who saw and liked The Keep and that's great.
    It was called 'the yuppy flu' and I remember how crazy that made me.I plan to hit our papers when the results for xmrv are more established.I've been to our medical doctors and have been told to pace myself and get used to being tired for the rest of my life.This from infectious disease docs,so you can understand why saying anything now would be counter-productive.They don't believe it's viral or possibly xmrv.
    They simply don't want to know and I wouldn't be heard by the right people.Not right now anyway.
    I also didn't know about most of the mentioned talents and their sickness.I wrote to Cher a few years ago and didn't hear back..why I thought she would think I was different is anyones guess.lol.
  19. Carrigon

    Carrigon Senior Member

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    The Keep is a total classic. I'm one of those horror movie snobs. I like the older films so much better than what's out now.

    That horrible Yuppie Flu name must die. My relatives have latched onto it and will not let it go. I swear, if I ever catch the newscaster who first came up with that phrase, there's going to be a special corner in hell for that person.

    The name of the disease is what has kept us all down all these years. I hope XMRV is THE one, but we don't know yet. There is definitely an infectious agent at work. I just hope in our lifetime we get to see the truth come out and to see the attitudes change and the name change.

    Most doctor's will not take it seriously. The only way I got any respect out of my doctor's office was to tell them I had Advanced Lyme, which I also do. I think they are entirely separate entities. I got hit in the 80's with something that gave me Fibromyalgia, and then I got hit in 91 with what felt like a retrovirus and I got full blown CFIDS/ME from it. I was already Advanced Lyme prior to this, but wasn't really showing much symptoms from that. I think there are more than one infectious agent out there that can do all this.

    What angers me is when you go to the doc's office and they are booking tests for you and they ask you what you have because they are on the phone with the hospital and the hospital needs to know. You tell them you have this disease and they ignore you completely and never mention it to the hospital. I've had it happen. That needs to change.
  20. alice1

    alice1 Senior Member

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    JVP congratulations...you are definitely up there and I can understand your fear.I moved back to Toronto a few years back and don't have the same pressures as you.I was working on 24 but quit because it was too grueling and I couldn't stand the atmosphere on set which I think was more harmful than the hours.
    As for doctors...f&8k em.The only ones that seem to be at all helpful for me are naturopaths.I'm waiting to speak with Dr.Klimas with my results
    as I went to Miami several weeks ago.I'll let you know what she says.
    I couldn't get any of the tests I wanted done here so off I went.

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