1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

XMRV - Coming to terms with a new reality

Discussion in 'XMRV Testing, Treatment and Transmission' started by Koan, Oct 11, 2009.

  1. rockfaery

    rockfaery Guest

    This is my first post on this forum.. I was previously a member of other support groups and forums but so far I really enjoy the the atmosphere of this one and i hope to be an active part of this group. I am so overwhelmed by the fact that there is actual news.. no more spending hours reading through completely useless psychological studies (this coming from someone with ambitions of being a psychologist lol). This may end up being more of a rant because I just don't know who to talk to about this...
    I was a little late finding out about the virus because my job pretty much saps all the energy I have.. but ever since I learned about XMRV I can't tell if my world is crumbling or if this could finally mean rising from the ashes that are my life.. The idea that I could have possibly given this to people that I love breaks my heart. I have always wanted children and a family and now I wonder who would want that with me? Do I even want that if there is a possibility of passing this on to my children.
    While it does feel amazing to know that within 6 months the world could know that this isn't just the yuppy flu, it also begs the question how will we be treated if people see us as contagious? What's worse being treated as a lazy good for nothing malingerer .. or being treated as a leper?

    I also can't help but feeling so angry I can barely contain it.. probably a good thing I'm so darn tired! How could they have known about this almost 20 years ago and done NOTHING!! How many people could have been infected because of needless ignorance? I guess if it can be transmitted via sexual contact or blood maybe it's a good thing that donating blood or engaging in physical activity makes us feel so darn crappy.

    Anyways I guess that's the end of my ranting for now... hopefully someday soon I can feel the ground beneath my feet again.

    Lorine
     
  2. Sing

    Sing Senior Member

    Messages:
    1,368
    Likes:
    591
    New England
    XMRV Politics, Connection with Lyme?


    Dear Bluebird,

    I found your message fascinating and very well written. Thank you for the glimpse you gave us into the politics of Lyme Disease, by comparison, and about your background as a journalist. I think you offer some great ideas. I hope researchers and other thinkers take note.

    Cecelia
     
  3. Sing

    Sing Senior Member

    Messages:
    1,368
    Likes:
    591
    New England
    Reply to Koan

    You are so funny, Koan! I've had this illness for 15 years and gave up trying to tell people about it, mostly, a long time ago. Now I only talk about it on a need to know basis and then only as much and when it feels appropriate. Even then I usually strike out, encountering disinterest and denial--but, some few people are nice and do retain some part of the information I give them.

    And you know what, I react the same way! I am not interested in the subject and do not like to go into its negativity or identify as my body as much as this story seems to require. I also live in a kind of unreality and denial even though I am always coping with this thing...

    Finding this forum a few months ago and starting to participate has been meaningful, rich, and revelatory--I thank you all for your voices.

    And now there is the seismic shift of this news. Suddenly my physical experience entered social reality in a new way. As the most affected people, we are the first to feel the change. But this research is going to change life for many people and it has gotten the ball rolling, finally--finally--in the scientific realm. Isn't it something how we went from the z list to the a for research projects?

    Praise be. But there will be negative consequences right alongside the positive ones--not so many, hopefully, but that is how it goes.

    My best,

    Cecelia
     
  4. Sing

    Sing Senior Member

    Messages:
    1,368
    Likes:
    591
    New England
    About our fears of contagiousness

    Dr. Nancy Klimas, in her NYTimes blog a week or so back and in the video on ProHealth, comments on this subject. My memory is that she said it would be irresponsible of the media to classify this with HIV. She said that retroviruses vary greatly in contagiousness; many we are completely immune to; and so far it seems there is little evidence of family members or partners getting sick too--Don't quote me but go to Klimas for her views.

    Take care of yourself!

    Cecelia
     

See more popular forum discussions.

Share This Page