Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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In memory of Justin Noble - Justin30 on PR

Discussion in 'In Memory of ...' started by ScottTriGuy, Oct 22, 2016.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Terrible news - very regular poster @Justin30 has passed away - I hadn't heard from him for a while nor saw any postings - his last was Oct 11th - he died Oct 13th.

    http://www.legacy.com/obituaries/theprovince/obituary.aspx?n=justin-noble&pid=182058576&fhid=5868

    Donations to www.openmedicinefoundation.org

    Justin has a son not even a year old.

    Justin shared how the health care system failed him. He shared what he gleaned from his research. He told me about paraneoplastic syndrome and strategies to help with my air hunger. He was selfless that way.

    Justin had passion for life and fight for what's right and courage to share his story.

    It was my honour to know you Justin and have you call me friend.

    Rest in peace.
     
  2. Kati

    Kati Patient in training

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    :(:(:(

    Oh no. This is absolute tragedy. So very sad, I have no words. :cry:

    Justin may you dance and bounce with joy wherever you are.

    Sending hugs to family.
     
    Justin30family, MeSci, leela and 14 others like this.
  3. daisybell

    daisybell Senior Member

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    So sad....
     
    Justin30family, leela, merylg and 5 others like this.
  4. rosie26

    rosie26 Senior Member

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    So very sad and hard to take in, Justin was so young. I recall reading a post recently where Justin had said his ME had deteriorated. He sounded a lot sicker. I can't remember which post it was.

    I also remember Justin for his passion and vigour of spirit which I could hear in his writing.

    My deepest sympathy to family and friends of Justin.
     
    Justin30family, MeSci, leela and 11 others like this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    I am so sorry to read of yet another death in our community. I know it will hit those who knew Justin personally even harder. My condolences to his family and friends.
     
  6. CFS_for_19_years

    CFS_for_19_years คภภเє ɠรค๓թєl

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    This is terrible news. No one should die this way, this young.

    May he rest in peace.:tulip::heart::bouquet:
     
    Justin30family, MeSci, leela and 8 others like this.
  7. Skippa

    Skippa Senior Member

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    Oh wow, damn, you're posting away in a thread with "a username" the one minute...

    RIP very sad news... I know it has been mentioned before, but reminds me of Spike Milligan's obituary... is this what it takes to be finally recognised as ill?
     
    MeSci, JMadigan, leela and 9 others like this.
  8. NL93

    NL93 Senior Member

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    An absolute tragedy :cry:
    RIP Justin
     
    MeSci, JMadigan, leela and 8 others like this.
  9. Jennifer J

    Jennifer J Senior Member

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    Oh, no. That's really sad. This is so wrong. My heart goes out to his family and friends, deepest sympathy and condolences to you.
     
    Last edited: Oct 23, 2016
    MeSci, leela, merylg and 5 others like this.
  10. justy

    justy Senior Member

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    :cry::cry::cry: I am so shocked and sad to hear this news this morning. Justin was a kind and caring man who took the time to reach out and communicate with many of us here at PR.

    I had long conversations with Justin where he tried to offer me ideas that might help me, from his own knowledge and experiences.

    He never stopped trying to find answers for himself and for others. He seemed to have a strong sense of justice for all PWME and was horrified at the way the medical system treated him and others.

    How awful for his young family, who are in my thoughts. It is wonderful, that even at a time like this, his caring nature shines through - the family have asked that in lieu of flowers donations are made to the OMF.
     
  11. Countrygirl

    Countrygirl ME is not MUS

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    Oh no! This is terrible news! We have lost so many of our community this year. Too upset by this to say more.
     
    MeSci, JMadigan, leela and 8 others like this.
  12. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    leela, merylg, Jan and 8 others like this.
  13. Gingergrrl

    Gingergrrl Senior Member

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    I cannot believe this and am sitting here absolutely shocked and cannot stop crying. I cannot even process this information and no one awake at home to talk to.

    Justin first contacted me via PM in Aug and we wrote back and forth almost every day. He contacted me b/c I had a potential paraneoplastic syndrome similar to himself except with a different autoantibody. I will not disclose which Ab he had to protect his confidentiality, but he was trying everything from Prednisone to IVIG and next step was RTX or Cyclo and then possible surgery.

    He had a newborn son approx 3-4 months old and he loved him more than anything but his fiance left him and he was not getting the opportunity to see his son. The last msg he sent me was on Oct 12th (the day before he died) saying that he was not feeling well enough to reply (and this was not like him as he usually wrote very long messages which I cherished) and we exchanged so much information re: paraneoplastic syndromes, autoantibodies, and our treatments and lives.

    I did not want to rush him but finally replied today, not knowing that he had already passed away, telling him to take all the time he needed and I would be here when he was able to reply. I feel so guilty that I did not reach out to him further on the 12th but I had no idea this was about to happen. He had thanked me for being a good friend but I feel like I failed him.

    Justin, you were a very good and trusted friend and I am so horribly sad that your son will grow up without you. I already miss you horribly and we never even met. I pray to God that you are at peace now as you suffered so much in recent months. You will always be in my heart and I will keep fighting this disease in your honor. RIP my dear friend.
     
    Dainty, SueJohnPat, MeSci and 36 others like this.
  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Justin's contribution to Millions Missing:

    Missing since 2015:

    Justin - Vancouver, BC


    [​IMG]

    I have been sick for a year, but possibly longer. I hate even thinking about what it’s done to my life. What life?!


    I used to have a great career – business/sales, great hobbies, very athletic, tons of friends… and now I have a tough time even with one person in the room.


    At 30 years old I live in fear for my future because so little is done and no treatments are available.


    I have 50 symptoms – though that may be hard for someone to believe, it’s the truth.
     
    Last edited: Oct 23, 2016
    MeSci, leela, Cohen2 and 21 others like this.
  15. Ben Howell

    Ben Howell OMF Correspondent

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    I am so sad to hear this. Justin's posts were always intelligent and passionate, on point.

    RIP Justin. We will keep fighting.


    B
     
    MeSci, leela, merylg and 12 others like this.
  16. anciendaze

    anciendaze Senior Member

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    This is stunning news. Because he was so active on-line I had thought he was able to hang on. I don't normally ask people about their personal situation because I know this is bad, and I can only take so much. Now I wish I had done more.

    He was an intelligent and perceptive correspondent who frequently enhanced discussions in which he took part. It is hard to believe I will never be able to ask him the questions I was collecting to ask young people with particularly serious illnesses. His family has suffered a terrible loss, while we who are trying to piece together the puzzle of this disease, and battle the oblivious part of the medical profession, have lost a comrade in arms.
     
    MeSci, Sandman00747, leela and 16 others like this.
  17. snowathlete

    snowathlete

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    I'm gutted to hear this.
     
    MeSci, JMadigan, leela and 9 others like this.
  18. helen1

    helen1 Senior Member

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    So sad to hear about this. I had long conversations with Justin about treatments and doctors in the lower mainland of Vancouver . He was working so hard to get help and figure out what to do.

    He was due for his first IVIG soon and was nervous about the huge amount he was to receive. I wonder if he had his first session.

    I last heard from him at the end of sept and had been meaning to check in with him. i wish I had...

    Justin was a determined, kind and caring person. He was rightfully angry about the poor testing and treatment options available.

    I'm so sorry he's gone. I will miss him.
     
    MeSci, leela, cfs6691 and 13 others like this.
  19. Hutan

    Hutan Senior Member

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    Thank you @ScottTriGuy for letting us know this terribly sad news.

    Having today read Robert McMullen's book (http://forums.phoenixrising.me/inde...yelitis-by-robert-mcmullen.47495/#post-777619)
    and clicked through to Emily Collingridge's last message (http://www.meassociation.org.uk/201...81-2012-such-a-short-life-such-a-huge-legacy/),
    thinking about my own son sick with ME and now this news, I feel so sad for all the young people with lives limited by ME and, sometimes, tragically, cut short. And I feel sad for their families.

    Justin was often urging us to take action to make things better and he was right.
     
    MeSci, JMadigan, leela and 12 others like this.
  20. barbc56

    barbc56 Senior Member

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    This is absolutely heartbreaking. My sympathies to his family and friends.
     
    MeSci, JMadigan, leela and 8 others like this.

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