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Memorial Thread: M.E. HERO’'s gone but never forgotten.

Discussion in 'General ME/CFS Discussion' started by allyb, May 12, 2013.

  1. allyb

    allyb Senior Member

    Just the other day, I read “Forget M.E. not” by Alison Hunter and I realised that she wrote it 20years ago this year! Her words, oh -so- wise for someone so young, so poignant and pertinent that it could have been written yesterday. Alison died in 1996 aged 19 she was a true ambassador for ME and especially young people with ME.

    http://www.ahmf.org/forgetmenot.html

    As it is ME Awareness week I thought I may be fitting to have a thread to remember those who have courageously fought this disease and sadly are no longer with us. Also for those who have died having fought tirelessly on behalf of ME/CFS patients and whose loss we suffer greatly.

    Tragically there are so so many. Please add your M.E. Hero to this list so we never forget. :redface:

    Kindest warmest regards

    allyb
     
    rosie26, Adlyfrost, Sammy and 16 others like this.
  2. alex3619

    alex3619 Senior Member

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    I would like to add Rich van Konyenburg to this list. I first chatted with Rich about metabolic research in about 2000, and we began to debate this (often with Marty Pall) for some years. He then discovered Amy Yasko's research, and this led him to devote his time to research in methylation for ME and CFS. He is one of the few who have done successful clinical trials, showing that the methylation protocols can help many. He died suddenly last year.

    His memorial service can be found at: http://forums.phoenixrising.me/inde...nynenburgs-memorial-service-now-online.20889/

    Rich did more for us than almost anyone who is not a patient. I found myself deeply saddened by his passing: I literally could not imagine a world without Rich in it.

    He is still deeply missed.

    Warmest memories of Rich, Alex.
     
    barbc56, merylg, Sidereal and 24 others like this.
  3. beaker

    beaker CFS/ME 1986

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    2 friends, who fought the good fight, supported myself and others. They let their bodies be used for experimental treatments, and physically were the worse for it. But they wouldn't have done it any other way. They had have most generous hearts and souls. Thank you dear friends. I know you are free of your pain, but I miss you. God Bless.

    LeAnne Hyneman 6/28/64 -7/11/07
    Karen Brenner 9/28/65-7/17/12
     
    LaurieL, taniaaust1, allyb and 3 others like this.
  4. valentinelynx

    valentinelynx Senior Member

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    Kathleen Delaney, the first person I knew with ME/CFS. If it weren't for her I wouldn't have known to see Dr Goldstein way back when, and maybe never found out what was wrong with me. She came down with the illness in 1975 while she was a law student, I believe, top of her class in some Ivy League school (CFS put an end to her career). She hung on until her husband, whom she met years after being sick, the unforgettable Dr Oscar Janiger, passed in his 80s. Kathleen killed herself very soon after his passing, having nothing left to live for. That was in the mid 2000s, my memory fails me on the exact year. In the later years of her life (and she was only in her 50s when she died) she told me that the rest of the illness had become secondary to the crushing depression brought on by the illness. If someone here knew Kathleen better than I, I apologize if I've gotten the details wrong. I just know she was a wonderful person, and she was the reason why I finally looked up that crazy illness, "CFS" in the first place, only to realize that that's what had been making my life miserable for the previous 2 years (that was in 1995).
     
    vli, Allyson, allyb and 1 other person like this.
  5. Kina

    Kina Moderation Team Lead

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  6. Allyson

    Allyson *****

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    HI Kina,

    thanks so much for posting this thread - that is a lovely idea.

    alex3619 I also am grateful to RIch for his generosity and devotion and insight. He always had something thoughtful and useful to contribute and I know a lot of us deeply miss his presence on the site.

    This thread is also a good idea as one potential ongoing way of keeping some tally of those who die from this illness and would otherwise not be counted..... as no stats are kept on mortality from ME in most parts of the world.

    I personally know two with the condition who have sady died in the last few years- one had (a treatable) cancer and decided not to treat it as she felt it was not worth continuing in light of her condition (ie the ME which was so debilitating). She was in her 30s when she died. (BTW she looked radiant and the picture of health until the week or two before her death - neither condition was visible from her outward appearance ....though she could rarely get out of bed due to the ME.)

    Ally
     
  7. Kina

    Kina Moderation Team Lead

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    I know some might find it very difficult to read this thread. We don't want this thread to be upsetting. It's just a way for us to remember those who are gone and way for us to let the family and friends of those people to know we care.

    If the thread elicits any negative feelings, please do start a discussion in the 'Emotional Support' forum.
     
    beaker, vli, LaurieL and 3 others like this.
  8. Mya Symons

    Mya Symons Mya Symons

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  9. Mya Symons

    Mya Symons Mya Symons

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    Allyson likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    If it wasnt for Alison Hunters sad death.. Australia probably would be just like England as far as ME/CFS goes (thou its close to that now). The Alison Hunter Memorial foundation has worked hard over a very long time to get this illness taken seriously here, they've put much money into serious research studies, helped fly over ME experts to lecture to our doctors here and do so much else for ME/CFS in Australia in its attempts to get this illness recognised.

    Those in Australia.. do think about donating to this great Foundation which has worked tirelessly for us with ME since Alisons death. So I'd like to put my thoughts into I think was Alisons mum??? who started up the foundation too.
     
    allyb, alex3619, Allyson and 3 others like this.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Memorial Day--from Rich's wife, posted on Facebook:

    [​IMG]
     
    barbc56, allyb, Sammy and 10 others like this.
  12. Allyson

    Allyson *****

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    Oh that is so lovely - thanks indeed for posting it Sasha.

    I did not realise Rich was a Vet.

    We all miss him so much here and his incredibly valuable input.

    I will think of him every November 11th too now.... along with other relatives sadly lost.
    Ally
     
    LaurieL likes this.
  13. dannybex

    dannybex Senior Member

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    This was posted on Facebook today...very tragic, a real hero in the fight, Thomas Hennessy Jr., has died.

    "
    My dear friends,
    It is with a heavy heart that I share with you that our brother Tommy died this morning. As you know, he has been sick for a long time (more than 25 years!) with an sickness that left him debilitated both physically and mentally. Despite his amazing life force throughout his illness, today he apparently lost his will to fight any longer and took his own life. We believe that he is with my dad and we hope that he has found some measure of the peace that eluded him in the later years of his life. We ask that you pray for him and all of his family as we go through the journey of bringing him home to Maryland and laying him to rest. Please forgive me for sharing this news through email. We talked to many relativesall day and I could not discuss this any more today. My mom is holding up remarkably well and she and my brothers and sister join me in sending our heartfeltgratitude to those of you who offered support to Tommy over the years. I hope you will remember him from happier times. With much sadness,
    Mary for the Hennessy Family."

    My deepest condolences to his family. He was an amazing man...
     
    allyb, Sean, beaker and 2 others like this.
  14. dannybex

    dannybex Senior Member

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  15. alex3619

    alex3619 Senior Member

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    Thomas Hennessy is a name I recognize well. I have seen it so many times, for so many years. He did a lot for us.
     
    allyb, beaker and vli like this.
  16. Nielk

    Nielk

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    Very tragic. Shook me to the core!
     
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  17. dannybex

    dannybex Senior Member

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    Yes, he definitely did. And what amazed me is that despite so many ups and downs (mainly downs), and so much hard work on our behalf, he kept his sense of humor, as can be seen in the link above.
     
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    allyb and vli like this.
  19. roxie60

    roxie60 Senior Member

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    On days we feel like throwing in the towel it is good to be reminded of those who helped us in the fight, and those who lost the battle but only after a great fight.
     
    allyb likes this.
  20. Rrrr

    Rrrr Senior Member

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    oh my god. this is horrible news. he was soooo supportive all the time to us patients.
     
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