Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

10 Celebrities with ME/CFS - by Erica Verrillo

Discussion in 'General ME/CFS News' started by Bob, Jul 16, 2014.

  1. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    Prohealth

    10 Celebrities with ME/CFS
    Erica Verrillo
    July 16, 2014
    http://www.prohealth.com/library/showarticle.cfm?libid=19057

    "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.""

    List of authors (see main article for details about each author):
    • Laura Hillenbrand, Author - “Living vicariously”
    • Keith Jarrett, Musician - “Playing the heart of things”
    • Michelle Akers, Athlete “Fought to the very end”
    • Blake Edwards, Film Producer/Director/Screenwriter - “Comedy saved me”
    • Randy Newman, Composer/Singer/Pianist - “The worst part is in your brain"
    • Mama Chill, Rap Artist - “Focusing on what I can do”
    • Cher, Actress/Singer - “Devastating for me”
    • John Rutter, Composer - “This was real”
    • Michael Crawford, Actor/Singer - “Smelling the Roses”
    • Leigh Hatcher, Journalist/Author - “Not crazy”
     
    Jo Best, pattismith, WillowJ and 8 others like this.
  2. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,216
    Likes:
    6,650
    USA
    Cher had it for 5 minutes. She had it in the 90's but no more. Stevie Nicks said she had it. She had Epstein Barr, but now she wonders if it was just all the drugs she did.
     
    Kati likes this.
  3. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    I thought that Michael Crawford (a UK actor and singer) thought he'd exhausted himself with his heavy performing (theatre) schedule.
    I think he went back to work after a period of rest.
    But it's a long time since I've read anything about him.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    Cher had EB too. Back then they thought they were the same.

    What I think is sad about this is the only one who talks about it is Laura Hillenbrand.

    I think there was another Olympic athlete, a female speed skater.

    @Bob, I saw Michael Crawford in Phantom of the Opera before I got sick in the late 80's or early 90's. Can't remember that far back.
     
  5. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,379
    Likes:
    24,193
    USA
    @Misfit Toy I have to agree with you re: Cher having it for five min. I think she overworked herself and had fatigue but not CFS as we know it.

    I love Stevie Nicks but she herself later spoke about going to rehab for benzo withdrawal vs having CFS.

    I know there are true celebs out there with CFS just b/c statistically it would be impossible for that not to be the case. I just don't think Cher & Stevie Nicks are two of them.
     
    Misfit Toy likes this.
  6. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,216
    Likes:
    6,650
    USA
    @Gingergrrl43

    Yes, I think it was that movie that Cher was in with Winona Ryder...where she felt burnt out and she gave Winona Ryder advice to take care of herself over the business of being a celebrity. She has spoken of it...of CFS, on Oprah, etc... but never had it for long which could mean she just burned out her adrenals for a bit from overworking.

    Stevie Nicks...who I also love.... I read this book by the band, Heart, where Nancy Wilson and Ann Wilson hung out with Stevie and stayed at her house and they partied hard...all of them, but they had never hung out with anyone; not a rock star, not a celebrity who took as many drugs as Stevie did. She did coke like no tomorrow, benzos, alcohol, etc and taught them both how to be up, what to take to simmer down and sleep, etc....and they found it unreal that she was still alive because she was mixing quaaludes with uppers and doing Heroine. It was horrible and they loved her but were so glad to get away from her.....too funny!

    Clearly, Laura Hillenbrand has it...that's for sure!

    Hmmm....maybe I need a quaalude for sleep! :meh:
     
    Valentijn and Gingergrrl like this.
  7. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    Stevie Nicks said her addiction to Klonopin and getting off it was worse than her coke addition.

    I did many a quaalude in college. Did a quaalude, drank a beer, listened to Layla and headed to the next bar. The good old days.
     
    panckage, Misfit Toy and justy like this.
  8. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    And supposedly Flea had CFS. It's quite obvious many of these sick celebs didn't have ME/CFS.

    On another note, I'd like to try a quaalude.
     
    panckage likes this.
  9. Chickadee9

    Chickadee9

    Messages:
    44
    Likes:
    48
    I think he may well have had ME but retreated to his estate in NZ and did nothing for a long time. A lot of us would recover/improve if we could do nothing in beautiful surrounds with everything done for us for as long as needed. So he was lucky he was able to do the right thing.
     
    rosie26, MeSci, taniaaust1 and 2 others like this.
  10. Mij

    Mij Senior Member

    Messages:
    2,269
    Likes:
    5,028
    @Chickadee9 "A lot of us would recover/improve if we could do nothing in beautiful surrounds with everything done for us for as long as needed. So he was lucky he was able to do the right thing.wrote "

    Do you seriously believe that???
     
    Last edited: Jul 17, 2014
    ivorin likes this.
  11. Chickadee9

    Chickadee9

    Messages:
    44
    Likes:
    48
    Yes I do but, of course, it won't apply to everyone. I think one of the reasons people stay ill is that they have to cope with the stresses and strains of daily living. It's hard to rest enough and turn your mind off when you have to shop and cook and pay the bills and there's little money coming in. Being relieved of that assists improvement or even recovery but I'm not suggesting there is any guarantee this will happen. I also wonder whether this may be a factor in the significantly better recovery rates for young people ie. if they live at home, have no money worries and are totally looked after.
     
    rosie26, MeSci, taniaaust1 and 2 others like this.
  12. biophile

    biophile Places I'd rather be.

    Messages:
    1,520
    Likes:
    16,577
    Yeah, a large proportion of regular people who think they have CFS or are loosely diagnosed with CFS do not in fact have it (meet criteria), so how can we verify that celebrities who mention is in passing actually have it?

    Overworking and over-training is not CFS, in fact IIRC those actually exclude someone from a diagnosis of CFS?

    I also don't blame celebrities for not announcing they have CFS. List a bunch of embarrassing things you would rather not do in public, and see where announcing your CFS is placed on that list. There would probably be less stigma and career destroying shame in farting into the microphone during a press conference, concert, or TV interview!
     
  13. redrachel76

    redrachel76 Senior Member

    Messages:
    489
    Likes:
    713
    Israel
    I believe if you rest in the beginning, the first 4-5 years for example then resting does highten the chances of recovery. But not after that.. I have been living with my parents since I got ill at age 15. I am now 37. I never worked.
    I went to school at the beginning and I think that was what worsened it.
    For a long time in my 20's I did not work, I still don't always cook and have never paid the bills. I am still ill.

    I think this is an autoimmune desease. There is a bit of research pointing to it, e.g Hokama ciguatera toxin, B cell signalling, rituximab. Autoimmune deseases have a relapsing remitting nature to them too.
     
    rosie26, justy and *GG* like this.
  14. Chickadee9

    Chickadee9

    Messages:
    44
    Likes:
    48
    I agree many celebs probably don't have ME. And if they do it's career suicide if they announce it.
     
  15. Chickadee9

    Chickadee9

    Messages:
    44
    Likes:
    48
    As I said it's not a guarantee but you obviously agree with me it improves your chances in the early stages if you have supportive environment...assuming you get the right advice in the first place!
     
    *GG* likes this.
  16. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,288
    Likes:
    12,020
    U.K
    I have just been diagnosed with Lyme disease, chlamydia pneumonia and bartonella - I odnt think resting would make them go away - I have been ill for nearly 20 years with 'M.E' and have been resting hard for the past 6
     
    SOC, redrachel76 and Valentijn like this.
  17. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,216
    Likes:
    6,650
    USA
    I was hit so hard with Epstein Barr...I slept constantly. Honestly, nothing you could have done would have made it better for me...better surroundings, a pool boy...you name it. I was SICK. I would have slept right through those gorgeous surroundings.

    Could it make a difference now to have those gorgeous surroundings and lots of money?...YOU BET!
     
    panckage and Valentijn like this.
  18. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    Many people with ME say that if they'd been given proper advice in the early days of their illness then their long-term prospects might have been better. Also, many have said that they think that bad advice (and inappropriate therapies such as GET) aggravated their symptoms and massively worsened their illness in the long-term. Perhaps this is felt most by people who experience more pronounced post-exertional malaise?

    From a personal perspective, in the first month of my illness, my symptoms fluctuated dramatically day-to-day. Some days I felt OK-ish in the first month. Exertion would cause me flare-ups, and the flare-ups became longer and longer in duration. But I wasn't aware that I had ME, or the nature of ME, or that exertion was a major problem, until a long-time into the illness.

    If I'd had been given advice to rest and pace to avoid flare-ups, then perhaps this could have had a long-term protective effect? For the first couple of years my symptoms continued to be very reactive, and I wasn't aware of pacing, and so I couldn't protect myself against relapses. I know for a fact that pacing and resting helps my illness stabilise and gradually improve, and that over-exertion can cause long-term almighty crashes from hell. Perhaps if I had intensively rested in the first month, it wouldn't have become a long-term illness? Who knows.

    But we're all different.
     
    Last edited: Jul 18, 2014
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,379
    Likes:
    24,193
    USA
    I do think that knowledge of CFS and pacing could have made a difference for me had I known. I had severe mono/EBV in beginning of 2012 but felt compelled to return to my full time job as soon as possible while simultaneously planning my wedding (also 2012.)

    Had money not been an issue and I had rested longer post-mono, I might not be so ill over two years later. I might not have developed CFS, tachycardia, POTS, and might be at a higher level of functioning now instead of on the verge of losing my job, health insurance and disability.

    But we will never know b/c I cannot go back in time. I am not implying that money makes the difference but having money and assistance that allows you to rest in the early days of illness might improve long term outcome in certain cases.

    ETA: I want to clarify that whatever viruses are now causing havoc to my system are there and I would be ill regardless if I was in a luxury surrounding. But if money & insurance were not an issue, I could solely focus on medical care and resting b/c I would have help with other issues that keep me from resting.
     
    AndyPandy, Bob and dancer like this.
  20. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Messages:
    4,665
    Likes:
    5,479
    He may have had health care personnel making quiet visits as well.

    Despite having no idea what I had and doing all of the wrong things, I nearly recovered in the first few months after the 'terrible flu'. Aggressive Rest Therapy and optimal nutrition might have got me through it (or not).
     

See more popular forum discussions.

Share This Page