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The emotional impact of XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by Andrew, Oct 31, 2009.

  1. Alice Band

    Alice Band PWME - ME by Ramsay

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    Kdp,

    I did email Dr Kerr to ask but there was no reply. Funny because he usually does.

    I'm wondering where the 500 samples came from for the "London" bloods tested and mentioned in the Independent newspaper article.

    Although he will have the bloods from the gene expression research and they will meet the CDC criteria, I can't see him having 500 samples?
  2. hvs

    hvs Senior Member

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    This is really angering. I'd like to come with you to your next appointment and see if they laugh now.
  3. Andrew

    Andrew Senior Member

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    Thanks for all the replies.

    I think I've had my hopes dashed so many times that I maintain a state of guarded optimism. XMRV has caught me off guard. And I'm afraid of being disappointed again. Because I've seen it happen again and again. A promising scientific discovery comes along, only to be torpedoed within a year.

    I think I had my feelings worked out before this. I think I was managing a state of guarded optimism. Now this has raised my hopes, but also reminded me of how many times my hopes were dashed before. So my feelings are sliding up and down and all over the place.
  4. Aftermath

    Aftermath Guest

    Optimism

    Your feelings mirror my own. I'm going to make a separate thread later this afternoon about the possibility of being overly optimistic. A lot of us, including myself, thought we were out of the woods a couple of years ago when Dr. Montoya's original work on HHV-6 came out. Then, the larger follow-up study basically flopped.

    I think that at this point, we need to guard our optimism a bit.
  5. Andrew

    Andrew Senior Member

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    What I'd like to see is a replication done by someone who has nothing to gain by discrediting WPI/NCI/Cleveland and willing to use subjects that meet the Canadian standard.
  6. serenity

    serenity Senior Member

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    Austin
    hi, i'm new - & very confused. why have these posts died down? i just heard about XAND yesterday XMRV whatever - i dont' get why there was a big uproar at first & now everything seems so eerily quiet? aren't we all still freaking out? where are the other new people like me who just heard?
    have the UK tests made everyone drop the issue? please help, i don't understand. where did the discussion go?
  7. julius

    julius Watchoo lookin' at?

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    dannyb, hit the 'what's new' button at the top of the page and you'll see the active discussions. XMRV is still a hot little pos-tato.
  8. serenity

    serenity Senior Member

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    Austin
    thank you ! i appreciate it, i will look for the button - i am so lost! haha! i appreciate the help :)
  9. julius

    julius Watchoo lookin' at?

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    If you can't find it, look at the top left see vBULLETIN, it's right below that.
  10. serenity

    serenity Senior Member

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    Austin
    yes i see it - "new posts". thanks :)
    i'm still confused it's not bigger news, i mean it would seem it would be headlines.
    i'll keep looking, i just can't believe it took me 4 months to hear of this.
  11. serenity

    serenity Senior Member

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    Austin
    how do we go about telling friends? should we even tell anyone yet?
  12. oerganix

    oerganix Senior Member

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    It is still pretty big news, but we are at the stage that we have to wait for good science to be done and that takes some time. There are many studies in the works, both in the US and abroad. The WPI study didn't claim to have the answer, just a signpost that it might be in the direction of XMRV. Many docs working with CFIDS/ME patients also say "it fits", but it still isn't proven, so you have to use your own judgement about 'telling' anyone. All you can say at this point is that this new study MAY have found the cause, but it isn't at all certain yet. If you do decide to "tell", the New York Times article focussing on Andrea Whittemore might be a good article to forward.
  13. serenity

    serenity Senior Member

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    Austin
    thank you Oerganix. i think it fits, so i am wrestling with the issue of telling family & friends. i still can't believe no one told me - i am surprised people pay so little attention.
    i need a little help with my own judgment - i wish people were talkin a bit about what they personally intend to do. & why.
    any discussion on this would be helpful to me. thanks.
  14. serenity

    serenity Senior Member

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    Austin
    thank you Oerganix. i think it fits, so i am wrestling with the issue of telling family & friends. i still can't believe no one told me - i am surprised people pay so little attention.
    i need a little help with my own judgment - i wish people were talkin a bit about what they personally intend to do. & why.
    any discussion on this would be helpful to me. thanks.
  15. kurt

    kurt Senior Member

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    danib, the early excitement has died down a little as people have studied out the issues involved in more depth. Also the three failed validation studies, two in the UK and one in Holland have made clear that a scientific consensus about XMRV will be a gradual and complex process. You can pick sides in the debate or choose to wait it out, but XMRV is far from the consensus view right now about CFS, although there are many supporters here on this forum. But the science has to be finished, we are still in the early stages. Even strong findings like an article in 'Science' have to be validated by outside labs and also a causal model must be constructed and tested, an then we need treatment studies showing success before the general population and medical community are likely to change their view of CFS. We have a long process ahead.
  16. serenity

    serenity Senior Member

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    oh, ok, thank you Kurt - you are saying it's the same old "we dont' believe it" that we have been hearing for years? ok. humn. i would have thought if it might effect them people would have started to think about believing it, but maybe not yet. i am always surprised at the extent to which everyone sticks their head in the sand over this illness.
    today was the first day anyone mentioned it to me, at the salon - my pedicurist, she said she watched the Dr. Oz show. so, finally i did hear a real live person say something to me about it.
  17. _Kim_

    _Kim_ Guest

    Hi danib,

    Welcome to the forums. That's fantastic that you heard about XMRV from someone who saw the Oz show. Our community was instrumental in getting Dr. Oz to talk about XMRV after he hosted Dr. Teitelbaum on his show and Dr. T. didn't say boo about the new discovery. One of our members (Dreambirdie) spearheaded a media campaign where we ambushed Dr. Oz with requests to tell the world about the XMRV discovery. I love that our efforts have had a trickle down effect.

    There's plenty for you to catch up on while we wait for more studies to be published. There is an entire XMRV forum, where you can see how strong the interest has been and still is on the topic. A bunch of us have been tested and you can see the results from our in-house poll.

    Got questions? Keep asking away. There's a whole crew here that would just love to point you in the right direction and get you up to speed.
  18. serenity

    serenity Senior Member

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    hi Kim, thanks - i actually found the information myself 4 days ago doing a casual study on CFS. i am diagnosed with fibro, but it was largely self diagnosis & the docs just said "sure why not" & i have always said my fatigue is as bad as my pain & i don't know which is worse. so i dunno what i have, but it's something - & so i want to know more.
    what i heard today about the OZ show was merely the first time i have heard another human utter (in real life not on the computer) one word about it. what continues to confuse the heck out of me is why everyday people aren't talking about this. this came out in Oct - & it took me almost 5 months to hear about it?
    that is just insane to me, & i still wonder why emotionally everyone is eerily quiet.
    i am not a patient person, i admit that - but i can't grasp why more folks arent' talking - & i dont' mean about this or that study i just mean normal talk like "wow did you hear there's another AIDS type virus out there?" (i wont' even use the word retrovirus, i am talking about the general public here). why aren't they saying "do you hear you can get it? "i have a friend with that!" "can i get it from them?" i dunno why the general attitude out there hasnt' already changed from not believing us to being afraid of us.
    to put it another way, instead of talking about what we think why isnt' anyone talking about how we feel?
    we need both of course, but i hear very little of how everyone is actually feeling about this?
  19. _Kim_

    _Kim_ Guest

    danib,

    If you are anything like me, soon every person in your life will know about XMRV. I prefer the sensationalist, yet scientifically accurate approach. I drop words like: cancer, blood supply, transfusions, asymptomatic carriers, and sexual transmission into my little spiel. When they get that L:eek::eek:K on their faces, I know they won't forget about it. Most ask me for follow up news now.

    FWIW, one of our members who tested XMRV+ has a primary diagnosis of Fibromyalgia.

    As for what we feel...

    It's been a rollercoaster. This thread probably didn't develop because we had so many others where we were talking about things more specifically - survival, testing, perceptions, safe sex, and on and on. Many members got so emotional about this that they experienced a worsening of symptoms from the stress of it. In order not to relapse, many here have had to become a bit more detached.
  20. gracenote

    gracenote All shall be well . . .

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    You DO have a way with words, Kim.
    :eek:

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