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A Tribute To Rich Van Konynenburg

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 26, 2012.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    This was sent from Virginia

    I am one of the people that you and Rich helped when I was bedridden in Mexico with CFS.

    Please extend my gratefulness, again, to his widow. I was alone, frightened, and very uninformed. He took the time to write and his information was instrumental in my return to the states. I really never expected the level of care he showed someone obviously with so little expertise.

    Virginia Carmichael
     
    merylg likes this.
  2. mfinch

    mfinch

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    Five years ago my health was in free fall following pesticide poisoning. At that point Rich's protocol made the difference between life and death for me and it has formed the basis of progressive improvements ever since. We only corresponded briefly but his generous, caring and unassuming nature and his exceptional insight made a huge impression on me. He is a great loss to us all.

    With heartfelt sympathy to his family.
     
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  3. Sparrow

    Sparrow Senior Member

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    I had no idea. I'm so, so, so deeply sorry to hear this. I think I'm a bit in shock.

    He was so generous here, always willing to help, or to lend his expertise to a question. I was always really touched that he took the time to give his advice to me.

    He will be missed. I'm very grateful for the time, effort, and energy he's put towards helping this illness for so many years.
     
  4. bel canto

    bel canto Senior Member

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    Rich was an extraordinary man - brilliant, kind, and generous. I am so grateful for having had the chance to know him.

    Diana, my most heartfelt sympathy for your loss.
     
  5. Jenny

    Jenny Senior Member

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    I am profoundly shocked and sad to hear this terrible news. My deepest sympathies go to his family.

    Rich seemed always to be there for us - I was constantly in awe of his compassion and dedication to our community.

    A few months ago, out of the blue I got an email from him offering to look in depth at my case as I hadn't benefited from his protocol. He spent what must have been days explaining all my test results and analysing my symptoms, giving me links to published work and summarising research on immune dysfunction that seemed relevant to my problems. We had never met but he seemed to care deeply.

    His generosity and kindness with remain with me always. I feel I have lost a dear friend.



    Jenny
     
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  6. I would like to express my condolences. I had not been in contact with Rich, but have read many of his very helpful posts. It is so kind of people to help strangers, with their knowledge and time.

    Rest in peace. x
     
  7. LaurieL

    LaurieL Senior Member

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    I have been through quite a lot in the last few years. I never got the chance to tell him how profoundly his patience and time have affected me and my health status. He started a freight train of good things that eclipses anything I have previously been through. My gratitude and RIP.
     
    anniekim likes this.
  8. WillowJ

    WillowJ Senior Member

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    you will be missed, Rich. a good man, and generous. with important ideas. I've always appreciated having you in our corner.

    condolences to your family, friends, and associates.
     
  9. globalpilot

    globalpilot Senior Member

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    Diana, I'm so sorry for your loss of Rich.
    I was so shocked and saddened by this news I have not been able to respond until now.
    Anything I write cannot convey how much he has meant over the years.
    He never gave up on us and I know he never would have. I thoroughly enjoyed my interactions him and reading his posts. He had a brilliant mind and kindness I have never seen before.
    Like Jenny said above, i also feel like I have lost a dear friend.
     
    anniekim and ukme like this.
  10. RivkaRivka

    RivkaRivka Senior Member

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    Rich's wife asked me to post this here. I'm so grateful to whoever organized this effort and contributed to it. Thank you! -- Rivka
    _______

    Today I returned home to find an incredibly beautiful lemon tree on our front porch, and it was planted in a large, quite beautiful pot.

    The accompanying card indicated that it was from all of you at Pheonix Rising. I'd like to thank you, and all of the others at Pheonix Rising for the tree and for all of your kind words. They have meant so much in this nearly unbearable time.

    Warmest possible regards,

    Diana Van Konynenburg
     
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  11. Astrid

    Astrid

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    This is very sad. I had not been in contact with Rich, but I'm still reading his many very helpful posts.This is a great lost for the ME/CFS community.


    Astrid
     
  12. bushie

    bushie

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    I, too, am devastated by Rich's passing and my heart aches deeply. The odd thing is, I had only known Rich(through emails) for about 6 months, yet he had a profound effect on me. It's true that a good part of that was because of his expertise in this area, but, equally affecting was his incredible kindness and humanity. I was constantly amazed at the effort he put into my case, and when offered to be paid he said he would do it for free. Who does that? Only a remarkable human being. I know now that many others had a similar experience, though Rich gave you the feeling that he was focused only on you. I enjoyed our exchanges well beyond the information that he gave me. I felt a warmness from him that transcended the cold computer screen text. I found myself longing to meet him someday, and deeply sad now that I will never be able to do that. I know I am going on about this, but it is because I find it difficult to put into words the tremendous loss I feel, and the whole PWC community feels, from his absence in the world. My deepest condolences go out to his family.
     
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  13. roxie60

    roxie60 Senior Member

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    I am stunned. I have not been to PR for awhile due to back at work and no energy but again not sleeping so thought I would stop by and catch up. I am so sad right now. My sympathies to Rich's family. What a kind and generous soul, giving of his knowledge and time to help desperate strangers try to make sense of what they are living with, helping to by educating and offering a strategy, encouragement and hope. This is a maddening illness and Rich could bring calm to a worried mind, he was able to take complex topics and make them understandable. He embodied the type of person, for those fighting this illness and all its maddening symptoms, need to have in their lives. What an enormous loss on so many levels. May his contributions to trying to find answers for those with CFIDS/ME/CFS/FM continue to produce fruit and hope in the community. Wow, what a hole in the fabric of life now that Rich has passed. Diana please know Rich was a blessing that words cannot convey. I have dealt with so many health issues for so many years I had just about given up. Drs had done more harm over the years but Rich in the short time I knew him gave me renewed hope. Rich educated me and helped me understand what I am dealing with which gave me hope and motivation to keep trying. Priceless, generous man. What a sense of loss I feel right now...I can only imagine how his family feels. I hope they realize how much the CFS/ME community appreciates Rich and hold him in the highest esteem.
     
    ukme likes this.
  14. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    Rivka, has the memorial already occured? I could find no info and when I goto his facebook page I cant see anything, I think I have to have already been friended on fb to see any postings on his wall from Diana.
     
  15. RivkaRivka

    RivkaRivka Senior Member

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    hi roxie60

    what a beautiful post you wrote.

    the "in person" memorials have happened, all in CA. but we are planning a telephone conference call memorial for all in the me/cfs/lyme/mcs communities to attend. we are right now working on that. it will be a sunday, sometime in the next 2-4 wks.

    best,
    rivka
     
    roxie60 likes this.
  16. SJB944

    SJB944 Senior Member

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    I like many others, am gutted by Rich's untimely passing. I only knew him through his willingness to reply to my emails, and his irreplaceable knowledgeable imparted on this forum. It's funny, how even though you can have contact only through emails, you are left with the distinct impression of a gentleman.

    He leaves such a gaping void.
     
  17. RosieBee

    RosieBee

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    I posted elsewhere and wanted to add my condolences to this tribute. Rich was such a warm, generous and well-respected man. He will be very much missed not only for his dedicated intellectual contribution but also for his kindness and understanding. Rich was kind enough to help me on a couple of occasions. People with this disorder are rarely treated with the compassion that he showed us. Rich will be very deeply missed. My thoughts go out to Diana and your family.
     
  18. Rand56

    Rand56 Senior Member

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    So sad to hear about Rich. A lot of you have been on this site longer than me and no doubt you got to know him better than me. It didn't take me long though to notice that he was very gracious with his time to try and help people. My condolences to his family.
     
  19. TheLilyPad

    TheLilyPad

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    I just happened to sit next to Rich during an IACFS conference (I can't recall now if it was Madison in 2004 or Ft. Lauderdale in 2007). Before the scientific session began we intorduced ourselves and chatted briefly. He told me of his new Glutathione depletion theory with great enthusiasm. I found his ideas very interesting and him very charming and obviously very smart. (As a former biochemist I was familiar with methylation cycles, etc. but as a person with cfs, at that point I was no longer able to concentrate on complicated chemical pathways and the like, so his theories were way over my CFS-fogged head!) Throughout the conference I saw him drawing cycles and discussing glutathione with everyone - the holy grail of CFS, so to speak.

    I saw his lenghty and helpful posts here occasionally over the years and thought back to our brief meeting. Just a few weeks ago I watched the online presentation he gave in Sweden and thought of him again.

    After 20 years disabled with CFS, last year I was diagnosed with Lyme Disease, Babesia and Bartonella. My LLMD recently precsribed for me glutathione injections, which reminded me once again of Rich and our brief meeting years ago. ( The glutathione has been amazingly helpful, and I can't help wondering why didn't the CFS community get on board with Rich's theory 5 or 10 years ago? We might all be feeling better by now! Unfortunately the mainstream medical community still doesn't have a clue about glutathione - my PCP claimed last week he had no idea what it was!)

    Some people come into your life just once, but leave a lasting impression. Rich Van K. was one of those exceptional people. He obviously touched many lives, including mine. I'm very sorry he is gone.

    (And, if you're diagnosed with CFS/ME, or Fibromyalgia, make sure to ABSOLUTELY rule out Lyme and co-infections by someone that knows! Tick-borne illnesses my be at the root of CFS, MS, ALS, Parkinson's, Alzheimer's and Autism. Get the facts and you may get your life back.)

    Julie Engle in MN
     
  20. triffid113

    triffid113 Day of the Square Peg

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    Wow! Rich was so active and involved in helping people it seems impossible that such a lively person could have just passed on like that. What a shock it must have been to his family. What a great loss....
     

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