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 Merryn

Discussion in 'In Memory of ...' started by Apple, May 23, 2017.

  1. Apple

    Apple Senior Member

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    Note: Apple added an update to this thread on August 21, 2017

    Merryn suffered from an incredibly severe form of M.E alongside a severe form of Ehlers Danlos Syndrome and other conditions. I believe she was 20 years old. :(

    [​IMG]

    "To all the lovely people who followed Merryn's journey, it is with the greatest sadness we tell you all our darling Merryn passed away in the early hours of this morning.
    Merryn was a true fighter and an inspiration, she coped with so much with a smile and a true Princess attitude, her palliative care team said they had never seen such suffering but such grace and bravery too.
    Merryn wanted to thank each and everyone of you for the support, caring and love you showed to her and to us. It meant so much to her and to us too.
    We feel so lucky to have had - and still have - Merryn in our lives. A quote that means a lot to us and is so very fitting at this time is 'How lucky am I to have had something that makes saying goodbye so hard'. However, it's not really a goodbye - more like a see you later.
    Run free, our darling girl, our Princess Merryn"


    https://www.facebook.com/MerrynsMagicalFund

    :heart:
     
    Last edited by a moderator: Aug 21, 2017
    sb4, Pen2, -Jessie- and 28 others like this.
  2. NL93

    NL93 Senior Member

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    Oh noo:cry::cry:

    Rest in peace Merryn :heart:
     
    johnnydme, erin, Apple and 7 others like this.
  3. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    How awful. :( Best wishes to her family. She was so young.
     
    johnnydme, erin, Apple and 3 others like this.
  4. bspg

    bspg Plant Queen

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    :heart::heart::heart:
     
    Apple, Mel9 and MEMum like this.
  5. maybe some day

    maybe some day Senior Member

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    Wow, this young lady made an impact on so many lives. Rest in peace, where theres no illness nor pain.
     
    erin, Apple, Mel9 and 5 others like this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    Am so sorry to see another young person leave us so soon. This quote from her family really struck me and Merryn clearly made a huge impact on so many people in her short life. God bless her and as the poster above me said, "Rest in peace where there is no illness or pain".
     
    erin, perrier, Apple and 5 others like this.
  7. Diwi9

    Diwi9 Senior Member

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    Thank you for sharing. Such a beautiful young woman, may she finally have peace. Clearly loved by her family and even in sickness, a blessing to them. Gone too soon and for no good reason other than medical research neglect. I hope her family is at peace knowing she is. These people gone-too-soon and those among us suffering a living death is why we must continue to advocate as best we can to save lives. We are all worthy.
     
    mrquasar, erin, Zombie_Lurker and 5 others like this.
  8. Aroa

    Aroa

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    So sorry such brave little princess went through this.

    All my love to Merryn, family and friends

    RIP :bouquet:
     
    erin, Apple, Mel9 and 2 others like this.
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    At loss for words

    So so sorry you had to go through this Merryn

    I`m an atheist, but I hope there is something else for u waiting.. <3
     
    outdamnspot, dadouv47, erin and 3 others like this.
  10. Keith Geraghty

    Keith Geraghty Senior Member

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    i cant bare to see and read of the passing of such a young beautiful person - i really get so angry with how the NHS and my medical colleagues, doctors and researchers view this illness

    I'll do everything I can to change things, even if its just a small change

    my prayers to the family
     
  11. Jo Best

    Jo Best Senior Member

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    Thank you for creating this memorial thread. Merryn turned 21 just ten days before her passing. She had been delightfully proactive for change for people with ME since her teens. I had the privilege of meeting Merryn on Facebook through the family-friendly Let's Do It for ME community campaign, run by people with severe ME to help raise awareness and biomedical research funds for the Invest in ME Research Centre of Excellence for ME. Merryn and her mother Clare were making and selling charm bracelets inscribed with the with 'Hope' 'Hold on' 'Pain ends' and continued supporting others when Merryn's own health worsened. A kind, courageous young woman and a beautiful soul.
     
    dadouv47, Aroa, erin and 6 others like this.
  12. perrier

    perrier Senior Member

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    Rest in peace oh beautiful sweet sweet angel
    Your suffering was great and unwarranted
     
    outdamnspot, Aroa, erin and 2 others like this.
  13. Gingergrrl

    Gingergrrl Senior Member

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    I'm not sure if appropriate to ask here, but is there a place that we can purchase one of the charm bracelets in Merryn's honor or to support her favorite charity?
     
    MEMum likes this.
  14. Jo Best

    Jo Best Senior Member

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    That's a lovely idea @Gingergrrl but I don't know if Clare had any left after Merryn's health got worse.
    If I manage to find out I will let you know.
     
    Gingergrrl and MEMum like this.
  15. maybe some day

    maybe some day Senior Member

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    I looked on ber facebook page the other day for some info but didnt find any. Her fb page is worth a look. Just an amazing young brave woman. Seems she was a fighter, advocate, and did the most anyone could to live life while confined.
     
    Hutan, Aroa and Gingergrrl like this.
  16. erin

    erin Senior Member

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    Such a shame, what a waste. Another young, beautiful human is passed away. Suffering ends and hopefully she's free and in a better place. Rest in peace Merryn.
     
    outdamnspot, Aroa, Gingergrrl and 2 others like this.
  17. Gingergrrl

    Gingergrrl Senior Member

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    Thank you both and I did look at her FB page but did not see any info about the charm bracelets. But if you hear anything, please let me know. It would be great to do something for charity in her honor.
     
    Jo Best likes this.
  18. Daffodil

    Daffodil Senior Member

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    How gut wrenching this is.
     
  19. Shoshana

    Shoshana Northern USA

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    We love you, Merryn.

    SO sorry you had to suffer so much. Still, a wonderful person.

    Love to her family as well!
     
  20. Konflict

    Konflict Senior Member

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    Rest In Peace Merryn. I have also been developing EDS symptoms since taking methylated vitamins and believe to be headed down the same road. I pray you watch over me and can someday help me get a diagnosed or something to treat this.
     
    Nickster likes this.

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