Friday, January 21, 2011

XRMV+ and Desperate for a Cure

Fifteen years ago, I was a very happy, healthy preschool teacher. I was the wife of a man I adored and had three growing boys/men who were the light of my life. I was not one of those driven kind of people. I was someone who knew how to stop and smell the roses and there were so many roses to smell. I loved to dance and go to concerts. I dreamed of the days ahead when my husband and I would be able to travel. Our plans were to buy a small motor home, have a small home base, probably an apartment by the beach in South Florida, and spend the rest of our time visiting our three sons...wherever they had chosen to settle. My days were filled with laughing children, close friends and a loving, happy home.
I'm not really sure exactly when it all changed. All I know is that I got sick and never got better. And, I'm not talking about the kind of sick where you can still function, this was something I'd never experienced. This was a combination of being run over by a steamroller and having my finger stuck in a light socket. This was I couldn't get up, I couldn't talk very much, everything, including the air, hurt and I was totally and completely exhausted, but couldn't sleep. Torture. That's what this is. It is living torture.
I was finally diagnosed with Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelits in the rest of the world.
Until recently, there was no known cause for this incredibly debilitating disease. Until recently, there was very little hope. Now, I know that I have a retrovirus called XMRV. Even though a retrovirus is a very scary and dangerous thing, (HIV is another retrovirus), I am thankful every day to have something to be hopeful about. I miss my life. I miss my children. I miss my grandchildren. I miss being able to be a good wife, mother, grandmother, daughter and friend.  Most of all, I miss me. But, now I get to be hopeful about all of this:


In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

http://www.rescindinc.org/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

XMRV is similar to HIV, the retrovirus that causes AIDS.

Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/note.php?note_id=160913563956987

Thank you so much for reading my blog. I hope that it will help someone somewhere.
I hope that my family and friends remember who I was, because I fully intend to be back and actively loving them someday soon.

23 comments:

  1. {{{hug}}}
    Thank you for the courage to share your painful story, along with the hope that's been found with the discovery of XMRV and the wonderful research of the Whittemore Peterson Institute!

    ReplyDelete
    Replies
    1. (drezomospellhome@gmail.com).D R ezomo is the only Dr who could ever get my HIV-AIDS cured with his healing spell, I have tried almost everything but I couldn’t find any solution on my disease, despite all these happening to me, I always spend a lot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day I was just browsing on the internet when I come across a great post of! Michelle! who truly said that she was been diagnose with HIV and was healed that very week through the help of these great powerful healing spell doctor, sometime I really wonder why people called him DR ezomospellhome I never knew it was all because of the great and perfect work that he has been doing that is causing all this. so I quickly contacted him, and he ask me some few questions and he said a thing I will never forget that anyone who contacted him is! always getting his or her healing in just 6 hours after doing all he ask you, so I was amazed all the time I heard that from him, so I did all things only to see that at the very day which he said I will be healed, all the strength that has left me before rush back and I becomes very strong and healthy, this disease almost kills my life all because of me, so I went to hospital to give the final test to the disease and the doctor said I am HIV negative, I am very amazed and happy about the healing Dr ezomospellhome gave to me from the ancient part of Africa, you can email him now for your own healing too at drezomospellhome@gmail.com.

      Delete
    2. (drezomospellhome@gmail.com).D R ezomo is the only Dr who could ever get my HIV-AIDS cured with his healing spell, I have tried almost everything but I couldn’t find any solution on my disease, despite all these happening to me, I always spend a lot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day I was just browsing on the internet when I come across a great post of! Michelle! who truly said that she was been diagnose with HIV and was healed that very week through the help of these great powerful healing spell doctor, sometime I really wonder why people called him DR ezomospellhome I never knew it was all because of the great and perfect work that he has been doing that is causing all this. so I quickly contacted him, and he ask me some few questions and he said a thing I will never forget that anyone who contacted him is! always getting his or her healing in just 6 hours after doing all he ask you, so I was amazed all the time I heard that from him, so I did all things only to see that at the very day which he said I will be healed, all the strength that has left me before rush back and I becomes very strong and healthy, this disease almost kills my life all because of me, so I went to hospital to give the final test to the disease and the doctor said I am HIV negative, I am very amazed and happy about the healing Dr ezomospellhome gave to me from the ancient part of Africa, you can email him now for your own healing too at drezomospellhome@gmail.com.

      Delete
  2. Of course we remember who you were. Better still, we love who you are. YOU are still here, with us, just your body is in revolt.

    I'm very proud of you for writing this. It's painfully beautiful.

    ReplyDelete
  3. Yes, I know exactly what you mean. Being XMRV+ has given me hope! Let the clinical trials begin. Thanks for the blog.

    ReplyDelete
  4. Beautifully written Pat. I completely agree with Jan, I may not have known you before CFS, but I have always known your kind and loving heart, your sweet smile and have ALWAYS in a big way admired your strength, courage, ability to deal (especially with the bad shit) and the amazing mother and grandmother I have seen you be....you may not be functioning at maximum capacity, or even close to it, with a body in revolt (well put) but despite any of that, make sure you know that today as much as any other - you ROCK! These research breakthroughs are truly incredible and I'll add my hope to your hope for great possibilities in our (near) future!

    ReplyDelete
  5. By far the most moving account I have read today. Thank you for taking your time and precious energy to shine a light on the need for greater public awareness through accurate information the media and not you, a sick patient should be doing. I also appreciate the need for ample public funding aimed toward finding out what exactly this XMRV retrovirus does in the human body.

    ReplyDelete
  6. Beautifully said. It took a lot of courage to write that, Pat. Thank you for sharing all our stories. I hope with all my heart you get your life back but I agree with the other posters, you are a beautiful soul and wonderful courageous mother and wife...nothing can ever change that. Love to you! Namaste.

    ReplyDelete
  7. thank you for this, it made me cry, i remember the me i was before, i think we all do, an want our lives back, with hope from the WPI we may have a chance, XMRV treatment may be our chance to have our lives back, chris xx

    ReplyDelete
  8. We lost our old lives, but we have a new mission. Every person who reads this and learns a little about XMRV is one more person who ought to support the research, for their own health's sake!

    ReplyDelete
  9. I am crying. I am so proud of you, my dear sweet sister-friend. Thank you for being brave, for putting yourself out there with this blog. I will immediately become your "follower", look forward to your continued posts, to the research leading to healthier days ahead, & to you getting your cherished life back. I love you.

    ReplyDelete
  10. Thank you for sharing your personal story. My heart goes out to you - I hope and pray every day for that cure!

    ReplyDelete
  11. If the retrovirus turns out to be the cause, then the WPI scientists deserve the Nobel Prize.

    ReplyDelete
  12. I second that Tina - Mikovits would win a Nobel Prize.

    ReplyDelete
  13. Super blog post; thank you for sharing your story. It's imperative we share what is known of XMRV. The science is crying out for more funding. Without funding 17 million people will remain desperately ill and they may also be infectious. We need to know - the world needs to know!

    ReplyDelete
  14. How could I forget the precious little girl who clung to her Dad and me like
    a monkey hugging a tree.? I have only beautiful memories of you and
    expect you will come back to your former self. You are still the same
    Pat to me, only carrying a larger burden. Your blog brought tears to my
    eyes, (which you know is hard to do). I love you just the way you are and
    always will, no matter what happens.

    ReplyDelete
  15. mom,
    i don't even know where to begin. but i will say this, the last few times i've talked to you, you have that lightness back in your voice & i want you to know that no matter how sick you may feel, your strong, compassionate, truthful, & inspiring spirit still shines through all the other bullshit! that's how i know you & always will! you never stopped being that person & you never will because love always outweighs fear & positive always shines through the negative, especially in you! you may not be able to dance like you used to, or travel like you want to, but you still emanate love constantly! & that is just who you are, cfs, or not! i love this blog & i want you to keep writing! i love you mom!

    ReplyDelete
  16. How very nice to see these personal comments. This illness affects people, not numbers.

    ReplyDelete
  17. Pat, you put my own thoughts and feelings into words. I, too, am a Florida mom of three, grandma of three and just found out after 11 years of CFS that I am x positive. My husband and younger daughter have CFS as well. We are waiting....I cried reading the comments from your family. Although the losses rob us and our families of things others take for granted, although they carve into the very core of who we are, your love has clearly triumphed.

    ReplyDelete
  18. mama pat i am so proud of you and your heart strength to be able to create this blog to express yourself,inform, educate and inspire your family,friends and beyond......thank you for being the most wonderful mom i could ever ask for. keep writing, i want to keep reading and appreciate you with all my heart. xo

    ReplyDelete
  19. Pat dear --- you have touched a lot of hearts along the way. Know how much you are loved and we all know you will get well.

    nanette & budd

    ReplyDelete
  20. I am from Ecuador, I want to testify of how i got cured from HIV AIDS by a powerful herbal healing spell caster from Africa, I have been suffering from HIV AIDS for 14 years, i got infected sexualy by my ex boyfriend, i have tried all possible means to get cured from this deadly disease but proved abortive until i saw a post on the internet about a herbal healing spell caster who cure people from all kind of deadly and incurable diseased including ALS, HIV Aids, Ghonorrhea, Herpes,cancer etc, at first i doubted it but decided to give it a try, when i contacted the spell caster via email he helped me cast a herbal spell for HIV AIDS and i was totally cured from the deadly disease. Contact this great herbal spell caster for cure to any disease via email Dr.sebi@solution4u.com or call +27611734184 Goodluck

    ReplyDelete