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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Email from Dr Mikovits

Discussion in 'General ME/CFS News' started by Quilp, Feb 2, 2010.

  1. Quilp

    Quilp Senior Member

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    This is a personal email sent to me but i am sure Judy would not mind me sending her reply. It gives me hope, i hope it gives you hope too.

    God bless Mark xxx

    Dear Mark
    I read your email just after my talk in Santa Barbara and I cried. How to answer. I am so sorry that the tabloids made such a farce of a very real retrovirus infection present in patients throughout the world. We have detected XMRV in dozens of individuals with a ME diagnosis in the UK, Australia, Germany, Scotland...XMRV is NOT a MYTH it is a very real virus that we and others have detected. isolated and sequenced from cancer patients, CFS patients and children!!! Please go to our website www.wpinstitute.org or the Prohealth website to see the entire presentation which describes scientifically all of the differences in the studies and all that we did to show that XMRV is a NEW HUMAN RETROVIRUS of as yet unknown pathogenic potential but significantly associated with both prostate cancer and ME/CFS


    There are investigators n the UK who are taking XMRV very seriously and testing by our validated methods and working with us to find out the truth. NOt politics but truth. We will not stop at validation for you, Mark. We will find treatments to give you back whatever health possible. If you send me your contact information, I will make certain that you get tested and if XMRV positive, we will find treatments for you.


    6 months from now, I envision thousands of ME/CFS patients enrolled in clinical trials of XMRV therapeutics. The world-wide scientific community knows that XMRV is REAL and the best and brightest world wide are already dedicating their talents to XMRV research!!


    Thank You for your kind words of support and encouragement.I look forward to the day we meet to celebrate that you and millions of others are well on the way to living your full potential which will be a great thing for the world. Know, Mark, that not one scientist working with us on your behalf even blinked at the attempt by Imperial college to marginalize you or the discovery of XMRV. Like you they encouraged me not to be discouraged. PLEASE KNOW that I will NOT STOP the work to treat XMRV infected people to prevent this disease from ever destroying another life.


    Love
    Judy
  2. Robin

    Robin Guest

    Thanks for sharing this, Mark! It made my morning!
  3. George

    George Guest

    WOW! What Passion!

    Thanks so much for sharing that Mark. That is really cool! REALLY COOL!
  4. joyscobby

    joyscobby Senior Member

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    :victory:

    Thanks for that makes me feel a lot better and I feel like I got a mention as well. All I can say is what Dr Judy said it is real. I know it is here in the Uk and in my case in Scotland. We need to be patient, stay strong and supoort each other. Our time will come soon.
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Quilp,

    Thank you so much for posting. Just like Robin said, it made my morning - oh wait - it made my day!!:Retro smile:

    Take care,

    HW
  6. V99

    V99 *****

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    Thank you Judy, and you too Quilp.

    Keep fighting everyone. x
  7. Katie

    Katie Guest

    You have no idea how much I needed that today. In fact, I don't think I knew how much I needed that!

    Isn't she just wonderful, gosh we're so lucky.
  8. froufox

    froufox Senior Member

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    Wow what a fantastic email!! That was so encouraging to read, thanks for posting!!
  9. bettine

    bettine

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    Thank you Quilp for posting this, and thank you Judy for giving us hope!
  10. bakercape

    bakercape Senior Member

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    Cape Cod. Mass
    Thanks for

    Posting. What a wonderful woman. It's nice to have some hope for health again.
  11. valia

    valia Senior Member

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    Thank you for sharing this with us Mark,


    I don't think many did blink at the Imperial college results, in fact I don't know why they even bothered to perform them, as we could have accurately predicted their outcome


    All the best
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Speaking

    Speaking of tears.....

    tina
  13. Lily

    Lily *Believe*

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    Wow

    ...Such passion and compassion!!!!!!!!!!!! Too bad she's not a physician!:rolleyes: Actually I'm glad she's a researcher instead;)

    THANKS MARK for sharing that!!! I can only imagine what it must have felt like when you opened that email and read it - GOOSEBUMPS? A tear?


    YAHOO!!!!!!!:victory:
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    And isn't it wonderful to have a researcher who cares so much for patients. Many researchers become researchers because they don't like to deal with patients. We have a great researchers, years of prominent / respected work, who likes patients. Not to mention, she is a bull dog.

    Tina
  15. Koan

    Koan Be the change.

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    Thanks so much, Mark!

    She cried when she read your email, we cried when we read her email... this is some fine, fine crying!

    I love that woman!

    (You too!)

    :hug:
  16. fds66

    fds66 Senior Member

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    Oh wow, that is a wonderful reply. It did bring tears to my eyes and I think I really needed to read that too. Thanks for posting it.
  17. hensue

    hensue Senior Member

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    She cried, I cried and Thank God for Judy! Thank you so much for sharing and giving us all hope this morning!
  18. shrewsbury

    shrewsbury member

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    :hug:
    Thanks so Mark. What a wonderful way to start the day. This is going up on my desktop as an on-going 'big-picture' reminder.
    :hug:
  19. I have tears in my eyes.
    What a legend.

    Rachel xx
  20. Sing

    Sing Senior Member

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    New England
    Wow! She REALLY cares! I must not have been believing that these people in charge of research and treatment do. I must have been feeling alone in this experience of ME/
    CFS, still. Not, thank God, in terms of you wonderful people becoming friends and allies here in this forum, but in relation to those who work "on our behalf". Her passion and compassion shows such power. I know she will be leading a superb effort now, and we will start to have some answers soon!

    Sing

    P. S. Mark, would you be willing to share the letter that you wrote, which instigated her wonderful letter back to you?

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