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California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
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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. Dainty

    Dainty Senior Member

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    I am convinced that Elizabeth Prentiss had CFS. As I understand it she would be bedridden for weeks on end with it and otherwise had poor health and little energy.

    The information is difficult to find....I've only read the book Stepping Heavenward which is fiction but contains many biographical elements, namely the illness, but I have yet to read her biography in full; I read the previous book back when I could concentrat better and now find I cannot focus well enought or ead the biography. But if some one else would like to it can be found for free here: http://books.google.com/books?id=_3...&resnum=3&ved=0CDYQ6AEwAg#v=onepage&q&f=false

    She is a historical figure best known for writign the hymn More Love to Thee I highly recommend Stepping Heavenward, I think it's available for free too. She becomes ill soon after she was married, if i remember correctly, but then again I only read the fictional account which may differ some on the details.
  2. Dolphin

    Dolphin Senior Member

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    This suggestion of mine is pretty obvious but just in case anyone is interested: one trick to find existing lists (that might have names not on this list) is to put a list of few fullnames (or perhaps unusual surnames) that might not have much in common except that they have ME/CFS into one Google (or other search engine). A percentage of the results can be lists of people with ME/CFS people have put together. One would need to try different combinations - one won't necessarily get them on the first search.

    I have too much on myself to do it.
  3. lucy

    lucy Senior Member

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  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wikipedia has two lists of people with ME:
    http://en.wikipedia.org/wiki/Category:People_with_chronic_fatigue_syndrome
    http://en.wikipedia.org/wiki/List_of_people_with_chronic_fatigue_syndrome

    Ken Wilber is on the list. He lives in Boulder and kind of has a cult following so he could influence some people to help us if he was inclined and he seems to know a bit about ME. He wrote on his blog in 2006 that his ME caused him 12 seizures in a row one day. Got taken to the ER and was unconscious for 3 days. The docs were amazed he lived because his kidney failure was so bad. I will try to get in touch with him at some point.
    http://www.kenwilber.com/blog/show/214
    http://www.kenwilber.com/Writings/PDF/hi_folks.pdf
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I was researching an apparent outbreak of ME at my college Brown and in Providence, RI where it is located after noticing several other people on PR went to Brown. Anyway, Leila Pahlavi, Brown '92 had ME and died at the age of 31. The death at first attributed to ME but was later chalked up to other causes. From the published accounts, I suspect the ME was a main cause. Her father, the Shah of Iran, died of Non-Hodgkin Lymphoma. I will get around to including her in the Wikipedia lists.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Xandoff likes this.
  7. andreamarie

    andreamarie Senior Member

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    Leila Pahlevi committed suicide; she also had severe anorexia and bulimia. I saw a documentary where her mother talked about her. She sounded like a very troubled person; her brother committed suicide this yr. It sounds like that family never got over being exiled. Money was not an issue in Leila's case. Anorexia has a twenty percent mortality rate.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The evidence from the medical inquiries into her death pointed away from suicide to an accidental overdose (with ME and anorexia perhaps contributing to the death).
  9. Valentijn

    Valentijn Activity Level: 3

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    I was re-reading one of my favorite books today (Sunshine, by Robin McKinley) and checked out the author's site to see if there was anything new out. Lo and behold, her blog had recent posts about her having ME/CFS.
  10. KnightofZERO

    KnightofZERO

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    This is the author of the Blue Sword and the Hero and the Crown? Wow. I wonder if she is up to do any advocacy?
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    Ken now lives in Denver. He knows a lot about ME as he completed everything but his dissertation for a a Ph.D. in biochemistry and has been instrumental in directing his treatment and has followed the research for a long time.

    He is, unfortunately, almost impossible to get ahold of due to being a celebrity. So far, his role in advocacy has been in telling his own story. He is still very involved with his online university, writing, and other huge projects, even though much of it is done from bed.

    Sushi
    Sing and Xandoff like this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sing, Ember, heapsreal and 2 others like this.
  13. Dolphin

    Dolphin Senior Member

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    Leann Rimes was mentioned in this series of short interviews: http://www.davidmsinger.com/2013/04/14/the-lens/ . I have no idea whether she is a patient or not. I didn't take notes but I think Bob Miller mentioned her. Other "new" names might have been mentioned: he (or whoever it was) mentioned writing to celebrities.
  14. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    One thing that strikes me about this man is his attitude toward his illness. He is majorly debilitated, nearly died a few years ago after 12 grand mal seizures in one day (so he is "living with death," so to speak), yet he talks about learning to have a good life by coexisting with his illness, taking medications for symptoms, going to bed (for years sometimes) when he has to, but getting back up and carrying on with the work he loves (writing) when he is able.

    He described his illness as "incredibly annoying," rather than as something that wrecked his life.

    It is a short video, worth watching.

    Sushi
    jenbooks and merylg like this.
  16. leela

    leela Slow But Hopeful

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    I've always been a fan of Ken Wilber, and this video is really great. He said a lot of very important things.
    I just wish he had mentioned that he was able to keep writing thanks to what I imagine is scores of devotees
    taking care of his everyday needs.

    I think this is one of the hidden, tragic side effects of this illness--just bathing, doing laundry, feeding oneself
    uses up the tiny energy bank account and there is little, if anything, left over.
    Sing, ahimsa, Sushi and 2 others like this.
  17. Dreambirdie

    Dreambirdie work in progress

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    I'm not a big fan of Ken Wilbur's work, (very overly cerebral for my liking), but I have a similar attitude to his, when it comes to staying focused on what I love to do, and doing it whenever I am able. In my case that's music and painting, and any other creative projects that grab me. That has been essential to my surviving 35 years of this damn disease.

    Because I don't have an entourage of helpers (except for those in my vivid imagination :rolleyes:), I've had to learn to prioritize. Food prep is the only essential on my list that comes before art and music. And even that is reduced to 10 minute meals, preferably cooked in one pot. If it takes longer than that to prep, then forget it. Next comes dishes, then bathing-2X/week, then laundry-2X/month, and house cleaning-done by a paid helper once/month. I used to be a super perfect clean freak until my last crash in 2009. Since then I have gladly traded clean, neat and orderly in favor of inspiring and creative. It's a victory for sure.
    Sasha, Sing and merylg like this.
  18. jenbooks

    jenbooks Guest

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    my connection is so annoyingly erratic I can't watch the video as it stops and starts so much. Can someone tell me why he is feeling better--new medications, or--? Thanks. I love Ken WIlber. There's a video online where he uses a mind mirror and shows how he can basically zap himself instantly into a deep meditation--he's truly an adept. I love that he called it "incredibly annoying."
    Sing likes this.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    jenbooks

    He doesn't say what he did to pull out of his two year flare that stopped his writing. I'd guess he is cautious because many might blindly "do what he did" whether or not it was appropriate. I do know (because he said so publicly) that after his 12 grand mal seizures he started taking dilantin (pretty sure it was dilantin), though I don't think he has mentioned recently whether he still takes it.

    He also mentioned that after feeling better he was back to exercising. If that is the same as earlier, he was doing anaerobic exercise.

    Yes "incredibly annoying" will stick with me and keep me smiling!

    Sushi
  20. jenbooks

    jenbooks Guest

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    I love putting it in its place like that Sushi.
    BTW are you still doing gcmaf? I am probably going to get my nagalase tesed next week and possibly consider very very low doses if I have elevated nagalase. I'm very sensitive and end to inflammation, so...

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