The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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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. Robin

    Robin Guest

    Hey! I just watched that season of 24 from netflix! You were awesome! Very intimidating yet vulnerable. I'm sorry the set sucked but at least you got to boss Jack Bauer around. :)

    Sorry that this awful disease has has haunted you for so many years and that people at work don't understand. That's very common.

    We're all hoping the tides change. My greatest hope is that future patients don't have to go through the horror that we have.
  2. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    When I was the CFS lobbyist in Washington at the beginning of the 1990s one of the colloquial names for CFS was Hollywood Screenwriters Disease. What I heard was that no one wanted to go public because they then couldn't get completion insurance and would be denied work.

    It's amazing how much attention celebrities get in Washington, and it could help our cause greatly if even a nonpatient/advocate would speak out strongly like Elizabeth Taylor did for AIDS. After 40 years living with this curse of a disease and knowing what other patients have gone through I would love to see it become a cause clbre.

    The Washington Post weekly magazine once had a picture on the cover of four actors lobbying for another issue on Capitol Hill. Cher and Morgan Fairchild were among them, but Fairchild had previously been asked and did not want to be public, and I won't out a patient.

    A famous actor came in to talk to the House appropriations subcommittee that is so important to CFS. He was lobbying for another health issue but he definitely knew about CFS. I was very surprised at how starstruck the committee members were by him. I wasn't, and I patiently waited another hour to talk to him afterwards and handed him my card. He rather rudely denied any knowledge of CFS, handed my card back, and walked away after about 10 seconds. Oh well, I was having a bad day anyway.

    The person that testified before him was the most impressive I ever saw. I normally got to the beginning of the waiting line outside the door to the hearing room two hours early in order to get in. (That's a warning to any CFS patient. It gets to be a marathon when the hearings are two per day, but the marble floor is soft to sit on...) There was a cheerful little girl who was maybe 10 years old pushing a wheelchair back and forth there in the hallway and her mother was sitting next to me. She said her daughter was there to testify because she wanted to do it again and that it was her wheelchair. The girl read her testimony in a calm, matter of fact voice, but her story was amazing. She had brittle bone disease and recounted her history of broken bones and treatments. The previous year while she was being pushed over the cobblestones just outside that building on the way out her leg broke (femur), but she was back again. Tough kid. I didn't think the actor's testimony was very good compared to hers, but all the cameras and press were there for him, and he got the bucks.

    Alberta, you were good in La Femme Nikita, although I have to say I have mixed emotions about the character, no matter how good looking. :)
  3. Dolphin

    Dolphin Senior Member

    Interview with Tottie Goldsmith (on ME/CFS)

    Just happened to come across this recent(ish) interview with Tottie Goldsmith:

    She would be famous/very famous I imagine in Australia from a quick look at Wikipedia and IMDB . She has also been on Neighbours which is quite big in some countries.

    I have watched little TV and a movie is a big commitment (so very few of them) since getting ME/CFS 20 years ago so the name means nothing to me but that means nothing.
  4. ExcelBrown

    ExcelBrown Guest

    thanks for this discussion I really enjoy reading it and it is really informative...BTW i never think harold is a music publicist...LOL

    Natural Sleep Aids
  5. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    ME/CFIDS Documentary Needed

    alice1 &
    I think one of the things we need most now is an excellent documentary in the vein of "Under Our Skin" (Chronic Lyme Disease). Kim Schneider did an amazing job years ago with "I Remember Me" especially considering how very sick she was. We need an bigger budget film that is cinematic and gripping like Under Our Skin. I don't have any more input than this right now, just putting the seed in your minds!
  6. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Gilda Radner had ME/CFIDS

    Gilda Radner was diagnosed with CFS before her ovarian cancer. Byron Hyde has implied that the "CFS" was really the ovarian cancer and that this misdiagnosis is somewhat common. Haven't heard that from anyone else though.
  7. jace

    jace Off the fence

    Hey justinreilly, do you think Michael Moore might be interested?
  8. dannybex

    dannybex Senior Member

    Actor Ben Stiller may have Lyme / CFS?

    While this article doesn't mention CFS, it seems like Stiller doesn't have a firm diagnosis, but his latest doc thought (as of five weeks ago) that he may have lyme. If he caught it last summer (when his son was diagnosed and quickly treated), but didn't become sick until traveling in Mozambique (see story), then who knows what's going on.

    Of course I wouldn't wish CFS/ME on anyone (except perhaps a few nameless people at the CDC for a month or two?), but thought perhaps I should post this in case anyone hears more info, if he gets worse, or hopefully recovers.

    Here's the link:

    (Warning: Lots of misinformation in the article...about how 'easy' it is to treat lyme, etc..)
  9. BEG

    BEG Senior Member

    Southeast US

    I don't believe any of them are sick, but you have U2 and Bono, who is forever speaking to Congress here in the states. ;) ;)

    Freida Hughes-daughter of Sylvia Plath and Ted Hughes:

    "Forced to look at how small my world had become, I realized I had to make some serious decisions about how I wanted to spend my precious time and energy. I realized I had silenced my own voice for years and now, reevaluating my life in the shadow of Chronic Fatigue, I was trying to do something about it."

    talking about her CFS in "Poetic License," May 2005
  10. Sing

    Sing Senior Member

    New England
    Yes! And I think of Koan here too, who has worked in the business and is extremely talented as we know--

    I hope the XMRV works out in terms of causation and we MAY have enough evidence this year, from what I am reading. After this, it will be more possible to tell our story.

  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    I still say a "based on real life" drama of Dr. Peterson's life is best way to go.

  12. SpringSummerAutumn


    updated golbal List of famous/historical people with CFS/ME

    Here is a short list of some celebrities (people who are or have been in the public, or media's eye) who have been diagnosed previously or still have chronic fatigue syndrome, Myalgic Encephomylitis or historical people who may of possibly had the disease

    Wikipedia list of celebs with CFS/ME

    Some notable names:
    Michelle Akers (Former Olympic soccer player, who starred in the historic 1991 and 1999 Women's World Cup victory by the U.S.. She won the Golden Boot as the top scorer in the 1991 tournament. She is a member of the National Soccer Hall of Fame. - In 1991, Michelle Akers was named the best woman soccer player in the world and had become the first woman player to have a paid endorsement. Yet after leading her team to victory for the first FIFA Women's Soccer World Championship in China, Michelle returned home completely exhausted. She rested and changed her diet. However, as time progressed, the fatigue headaches, gastrointestinal imbalance and metabolism problems progressed as well. Two years after the initial symptoms began, Michelle collapsed during a game at the Olympic Sports Festival in San Antonio, Texas. Diagnoses progressed from mononucleosis to Epstein-Barr virus (EBV) and finally, in the spring of 1994, to Chronic Fatigue Immune Deficiency Syndrome (CFIDS).

    Flea (Musician - Red Hot Chili Peppers - In 1993 Flea was diagnosed with Chronic Fatigue Syndrome)

    Howard Bloom (Named as one of the ten famous individuals with chronic fatigue syndrome in the For Dummies book on CFS)

    Cher - (singer songwriter - In 1992, Cher took some time off from her career and it was widely reported that the virus was responsible. My experience was it was really a physical illness but it does make you depressed as well, she told the BBC. Its a virus you have its called Epstein Barr virus and the disease it gives you is chronic fatigue. Boy, it was devastating for meI wasnt able to work for almost three years, the singer added.)

    Laura Hillenbrand (Wrote Seabiscuit: An American Legend, the basis for the film Seabiscuit during a 16 year struggle with illness. Hillenbrand also published an essay about Chronic Fatigue Syndrome titled: A Sudden Illness, in The New Yorker, July 7, 2003, p. 56)

    Pema Chdrn - (Author & Tibetan Buddhist nun - In 1994, after experiencing years of baffling, undiagnosable symptoms, she was found to be suffering from chronic fatigueimmune dysfunction syndrome as well as environmental illness. The following year, she undertook a long-term course of healing, beginning with a year off. In hindsight, she considers her illness to be an event of major significance: "It required me to simplify my life, a very sane thing to do." Her discomfort became a source of compassion, "a heartfelt connection with all those unknown people" suffering similarly or much more than her. "Life has taught me the wisdom of moving toward what scares me," she concludes.)

    Peter Marshall (The former world No 2 squash player was at his peak when hit by CFS. He was given the choice between a 250,000 insurance payout or a comeback. He chose the latter and made it back into the worlds top ten.)

    Laura Dundovic - (former miss universe - "I have chronic fatigue - it began when I was 15, I got glandular fever and I've been worn out since. They thought I had Hodgkin's lymphoma (at first), and that was very worrying. During my HSC (year) I would study during lunchtime because I couldn't stay awake at night. This carried on for years and just before I did Miss Universe, I hit rock bottom." She said she was sleeping up to 10 hours a day before taking part in the pageant.)

    Stevie Nicks (Fleetwood mac - Diagnosed with Chronic Fatigue Syndrome in 1987)

    Blake Edwards (Film director, screenwriter and producer. Writer of the Pink Panther series and Breakfast at Tiffany's - He described his struggle with the illness chronic fatigue syndrome for 15 years in the documentary I Remember Me.)

    Ricky Carmichael (motorcross racer - Carmichael was diagnosed with Chronic Fatigue Syndrome in October 2007. Ive just felt like Ive been running out of steam the past few months. Training has been difficult. Ive struggled to maintain my normal pace on my road bike and though Ive been extremely tired, Ive had a difficult time sleeping and never really feel rested, said Carmichael.)

    Ken Wilbur (philosopher Began having seizures on December 5, 2006, was diagnosed with RNase Enzyme Deficiency Disease (REDD)/Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Stating: "When the intensive care doctors asked me what I thought it was, the first thing I always said was that we can't rule out the most obvious: it comes with the territory of CFIDS/REDD/ME. In fact, the reason that this illness is often referred to as M.E. (Myalgic Encephalomyelitis) is that, as one of its leading authorities, Byron Hyde M.D., put it, "By definition, all M.E. patients will have some level of seizure activity as part of their illness." And as for types of seizure activity, a standard comprehensive guide to M.E. lists them as: "simple partial seizures, petite mal seizures, and grand mal seizures.")

    Leigh Hatcher (Australian News presenter - Leigh wrote the book titled Im Not Crazy, Im Just A Little Unwell - relating his experience with Chronic Fatigue Syndrome.

    Keith Jarrett (A Google search for 'Keith Jarrett chronic fatigue syndrome' gives links to several of his interviews talking about the effect the disease had on him and his music.)

    Andy Hunt (Forced to retire early from football during the 200001 season aged 30, I was like a zombie, he said. It turned out he had Chronic Fatigue Syndrome (CFS). Hunt now runs the Belize Jungle Dome and Green Dragon Adventure Travel, a pair of adventure travel companies in Belize, with his wife, former MTV presenter Simone Angel.)

    Rich Carlson - Businessman and philanthropist, Founder of ProHealth, Inc. - (Carson has recently launched a campaign to change the name chronic fatigue syndrome, which he feels is demeaning to patients and trivializes the seriousness of their illness. Since late July when he first mentioned his dissatisfaction with the name, he has received hundreds of letters of support. Carson said, My favorite letter was from someone who said that calling this disease Chronic Fatigue Syndrome is like calling Parkinson's disease Chronic Shakiness Syndrome or calling Alzheimer's disease, Chronic Forgetfulness Syndrome. Carson is one of 'The Faces of Chronic Fatigue Syndrome' from portraits of 8 patients and 2 CFS experts. An exhibit which features photographs from renowned photographer George Lange)

    Florence Nightingale - Nurse - (Florence Nightingale's illness began in 1896 after she returned from the Crimean War and spent years housebound, too fatigued to talk to more than one visitor at a time. Her birthday (12 May 1820) is celebrated as International CFS and Fibromyalgia Awareness Day.)

    Charles Darwin - (There have been suggestions in several medical journals such as the Lancet and British Medical Journal, that Charles Darwin may of had Chronic Fatigue Syndrome. When he arrived back to England after travels to South America and Pacific Islands, he started suffering from what has been described as Fatigue, pains, abdominal troubles, headaches, insomnia, anxiety, dermal problems used to flare up at times of stress such as attending meetings trying to defend his theory of evolution.)

    Marie Curie - (At the age of 15 Currie suffered from a what has been described as fatigue or exhaustion or nervous troubles, after graduating with honours, and as Valedictorian of her class, from high school. The illness left her feeling extremely lethargic and she spent a year recuperating in the Polish countryside.)

    People i haven't added yet but would like help adding:
    any historical figures who may of had illness although not diagnosed as 'cfs/me' had similar symptoms - this helps show that has been going on for a longer time and isn't a made up or modern psychosomatic thing.
    someone mentioned Leanne Rhymes on a forum but i couldn't find much?
    any scientists/mathmaticians/ artists, musicians, political figures, etc...

    Please feel free to help add to the wikipedia list or send to someone who might desire to do so, so it can be more comprehensive (i know there have been similar lists in some online forums like this one - but if there is a global 'go to' list in Wikipedia it can be available & of benefit to a much wider audience internationally and used as a resource to help raise awareness and exposure)

    Benefit of such a list:
    Many of these people in the public eye have written or spoken out about this CFS and its effect. And for people living with cfs/me, or their families or friends can then knowing who these people are Google them to find out more information, how it impacted their lives, adding a public face to the illness, what treatments they researched and underwent what worked and what didnt, and it also gives hope that in spite of the challenges they faced were able to move on and how illness shaped them as a person, and how they grew from the experience - and to show its not an illness for 'lazy people' who may have an aversion to work, that many respectable people have it. I have added a few and updated a bit of details but it's a little bit tiring doing it all on my own.

    It helps bring illness into the public eye, and into the medias attention and thus more attention on treatment/cures/and general education of public's perceptions of illness.
  13. Sushi

    Sushi Moderation Resource Albuquerque

    Ken Wilber is also one of the Incline Village cohort. He has written many of his books lying in bed. He has been very debilitated over the years but is a great example of "using what he has." He says that luckily he can do much of the work he cares about without using his body, just his brain--and his brain is awesome. When he was hospitalized with about 12 grand mal seizures, he directed his own care, and because he was a well-known person, the doctors listened!

  14. KnightofZERO



    We, if the celebrity people who visit this forum are game, we should totally do a commercial!

    The most effective commercials are those with celebrities and dogs! Many times my sister saw the ASPCA "rescue an animal commercial" she was on the verge of tears. We have no dogs and cats, but I suppose celebrities could hold pictures of people with M.E. both those very old and those very young.

    Even a short message, like, "There is something you can do, it costs no money--only care, contact your congressperson now and ask for funding to cure M.E." would be a great start.

    Also if since some of our members have been in Hollywood surely they have friends who would be willing to be help who are also celebrities. And probably those friends wouldn't incur any risk to their careers since they don't have the illness themselves.

    P.S. hopefully the celebrity members or suffers, if you guys could contact Susan Douglas who is making the "What about M.E.?" Documentary that would be a great first step in my opinion-- she's on Facebook, and also on this forum (I think). (the first trailer)

    P.P.S Since we've already shown we can do a video (the "ME/CFS Phoenix Rising Video") maybe our next step should be one that would be direct, simple and could air on broadcast television while still communicating the "bullet points."
  15. leela

    leela Slow But Hopeful

    Couchland, USA
    One thing that occurs to me as I peruse this thread, is that the "celebrities" who have been cured, or are able to function enough to write, perform, travel, etc, are far more likely to have the support (financial and social) to have all the little daily things done for them, so the majority of their energy may be conserved for their creative/vocational pursuits. I thought about this while reading recent articles about Ms. Hillenbrand and her remarkable achievements. While I can only begin to imagine the strain on their relationship, her husband was there to take care of food, laundry, cleaning, bill-paying: lifestuff.

    Then the Money followed, so we might presume a small staff of people to manage these things. I would guess the higher up the celebrity scale you go, the more likely and the more vast the presence of support staff becomes. I often feel that if I had someone taking care of the whole ball of daily energy-drains, I might actually be able to get better, let alone work on that manuscript that is collecting dust.

    As it is, I pay someone from time to time to bring food, and someone else to clean once it's impossibly dusty and gross, but even with that level of help, I am often overwhelmed and undone by bills, unexpected circumstances, repairs, clothing or household needs, doctors' visits, bare-pantry syndrome--you all get it. I don't think the people on this celebrity list ever had to chose between bathing or making food for their "one big thing" of the day.

    I do wish a bunch of these high-profile sufferers would start an advocacy group themselves, and with a chorus of well-known voices, start raising funds and awareness. It would just be so enormously helpful. Their influence with the general public is one thing, but add to that their spheres of influence in other circles and so much could be accomplished.
    Sing likes this.
  16. KnightofZERO


    If anyone doesn't believe this is a serious illness of which the substantial majority Do Not get better and that advocacy isn't needed consider these reference links:

    forget me not


    Sophia's Story

    Causes of death among patients with chronic fatigue syndrome.
    Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S.
    Health Care Women Int. 2006 Aug;27(7):615-26.

    Also, we all want a cure, and one way we can speed that process along is through clear, uncompromising, principled advocacy. People are dying from this (though their death certificates may instead list something else) and the sooner a cure is found the less people will die: those are the stakes, simply put.

    Though it is harder since people go in and out of being well enough to effectively advocate, creating a sort of "rotating committee" we still need to do so despite these difficulties.

    I agree with Leela's idea here! :thumbsup:
    Sing likes this.
  17. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    Brittany Murphy

    Awhile back when Brittany Murphy passed away (autopsy pneumonia) I read an article written by one of her relatives suggesting that she had OI. Today I saw this article. It really does sound to me like she had CFS/ME. glen
  18. lucy

    lucy Senior Member

    I remember reading about a swedish parliament member and party secretary Pernilla Zethraeus who went down with CFS. Here is some info , but I suppose most of it can be found in swedish. What is striking, that while for many CFS sufferers the illness is not seen in appearance, for her the Bell's palsy makes huge difference in comparision with TV footages of her before the illness.
    It seems we don't have anyone extremely famous to represent us. But, as they say, if the mountain will not come to Mahomet, Mahomet must go to the mountain - one of us has to become extremely famous :) Fame can be constructed, we can see it with many singers/artists.
  19. Sherrie


  20. Live And Let Die

    Live And Let Die Senior Member

    Las Vegas
    I agree with you lucy, fame can be constructed. Asking famous people to go public with their condition probabaly won't work until later when research is stronger.

    I think if someone or a group of people with CFS made a documentary about people with CFS it would work. I don't mean a 30 minute "here are some people that don't feel good", I'm thinking more along the lines of, "this is my life's story and LOOK at what it is doing to me". The problem with this is the people involved would have to willingly exploit themselves to get the message out there.

    The made by CFS about CFS idea has one drawback of course, finding a group of CFS people that are up to making a documentary. You could always find some college kids or independant film students that would do it.

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