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XMRV Vip Inconclusive

Discussion in 'XMRV Testing, Treatment and Transmission' started by hensue, Dec 2, 2009.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I

    I agree with a lot of Levi said.

    But even if the XMRV thing isn't for sure, I think a 60 Minutes or someone should do an expose on the CDC in relation to CFS. That's a story and has been for years.

    Tina
     
  2. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    I agree with Levi.

    Except on the 4:1 odds. 20%? !?!?? Well, I'm glad you put a number to your feelings. If nothing else, in some subtle way i cant put my finger on, it prevents us from having an endless discussion about it -- I mean what is there to say? 20. 80. 20. 80. It just defuses my love of argument, which sometimes I am grateful for.

    Anyway, as Levi says, if this holds up, we should make fun of all the jerks harshly. I wish S. Straus was still alive to be embarrassed like all the rest. I'd probably send him 105 shots of me riding 105 miles on my road bike, as I used to do.
     
  3. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Supposing antiviral treatment works, I mean.
     
  4. anne

    anne Guest

    It's a good point. Having already transmitted it, I've kind of forgotten that the rest of the world doesn't know this!
     
  5. parvofighter

    parvofighter Senior Member

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    Grabbing XMRV by the Cojones

    Mea culpa! Having posted re: Oprah, a New Yorker article, and AZT I guess you can figure out which way the wind blows for me! ;)

    I am ALL for taking as much advantage of the momentum this community has built, to raise awareness of the need for coherent, scientific, evidence-based medicine: both diagnotics and treatment. If any of you have tried body-surfing pre-ME/CFS, you know what I mean. If you don't catch the wave, it takes a LOT of energy to start things again from a standstill, where we have effectively been rooted for decades. With all due respect to the fabulous work coming from Light, U of Pacific, etc, none of them have managed to get the kind of mainstream interest in Me/CFS that XMRV and WPI have. The vital importance of mainstream attention and momentum for ME/CFS must not be under-estimated. Consider also that - even if XMRV is found not to be the causal factor in ME/CFS - we have awakened an interest in the med/sci community for biological understanding of ME/CFS (even if, as I earlier noted, we are just tagging along as the ugly sister of XMRV). Further, the Science team have almost singlehandedly awakened a dawning in the ME/CFS community that we just might have some political clout. Just look at the influx of newbie posters on this blog since October 8th. I'm admittedly surprised at the inference that we shouldn't celebrate and take advantage of this expansion of this forum's critical mass - and encourage intelligent, tolerant discourse - including speculation and learning on topics which admittedly might affect us deeply. Whether everyone is interested in all topics is moot. After all, groupthink is what got us into this mess.

    I don't even need to know that XMRV is the cause of ME/CFS. All I first care about is: is this virus in me or my loved ones; is it active; does it cause pathology in the active form; and can it be treated more-or-less safely. I already know I have a persistent opportunistic infection that has given me ME/CFS as well as viral heart disease and stroke symptoms. And I also know that my current treatment is dearly expensive for this opportunistic virus. Like a politician, I'm having to go back to the trough regularly - might this be the XMRV "puppet master" reactivating my other infection? The XMRV finding is the FIRST explanation that makes scientific sense. My #1 motivation in being active on this forum is to shorten my cycle time from 11 years ago, when I first fell ill, to effective treatment,and getting my family's life back (to the extent that this is possible). For me to make intelligent decisions - if XMRV pans out -requires that I work my way up a bit of a daunting learning curve.

    Given how quickly my more serious neuro/cardiac symptoms come on, I would much rather lose face in public (as if that's any different from the ME/CFS rep in the past :rolleyes: ), than tank again medically, or even croak. I know I'm not alone in saying that I simply can't afford to be caught flat-footed. My kids are growing up. My life is slipping by. Time is a-ticking.

    SO... while we are waiting for XMRV validation results etc, I am using my time as productively as possible. I want to inform myself as well as possible, so I am confident that I can make my own determination on how robust forthcoming XMRV research is. I want to be able to look at the XMRV work coming down the pipe with a critical, informed eye. I want to be as educated as possible about potential treatment options, risks, retrovirologists - anything to do with potential diagnosis/treatment of XMRV retrovirus - so that when the gun goes off (and this will probably be an iterative process) I can hit the ground running. Does that mean I'll grab the first treatment available? No bloody way - I want my health back too much to make a snap decision. Hence the homework.

    With all due respect, there is a huge difference between being patient and being passive. I couldn't give a hoot what "the public" thinks about ME/CFS, but I DO care that their interest has been piqued. Also, I do care what people who know me think. And for that reason I have only shared the XMRV research with two of my closest friends. If XMRV works out, I may well never go on AZT. But I sure as heck want to know WHY. And that requires that I do a little homework.

    The only dissonance I see is the exhortation for members of a blog to wait this out quietly.

    As for Judy Mikovits (bless her cotton socks) - she got way ahead of herself in reporting unpublished data. That's just not done in scientific circles. I suspect WPI had their knuckles rapped a bit for that, and they are just hunkering down now, takin' care of business.

    So yes, let's be patient. But not passive. And let's be a little strategic about how to take advantage of this unexpected (and potentially fleeting gift of media interest. ;)
     
  6. fresh_eyes

    fresh_eyes happy to be here

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    You may be right in this analogy, Levi. Certainly many knowledgeable people agree with you, like the CAA, with their building-a-tarp-in-case-it-should-rain idea. But to my mind, lifeboats only matter if help is on the way, and we have already been adrift in the North Atlantic for the past 25+ years. Why not try to send out a mayday signal now, via the media - while people are listening.
     
  7. starryeyes

    starryeyes Senior Member

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    Hillary Johnson does have CFS that's why she became interested in it.
     
  8. fresh_eyes

    fresh_eyes happy to be here

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    You're right!:eek:
     
  9. Advocate

    Advocate Senior Member

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    Hi Kim,

    I really appreciate both you and Ms. Ross. (And I hope their new technician is really good!)
     
  10. Alice Band

    Alice Band PWME - ME by Ramsay

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    Wildaisy,

    The London organiser put in requests from people in her group on the 12th October (and after talking to VIP previously).

    They have been allocated a specific limited number of places. A few people dropped out and new ones were added in their place. No kits are being send from VIP. A London lab is doing 2 batches of blood draws.

    I think that they (VIP) are overwhelmed. Maybe it is the sending of the kits that is the bottleneck.
     
  11. leaves

    leaves Senior Member

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    not happy with that either

    Frankly I agree, I don't think anyone here has (1) "questioned the credibility" of VIP or (2) has stated that they believe VIP will not give the results if they have them, or worse, that (3) we do not trust them. Being pro-active is fine, but I don't feel comfortable with the email you sent.

     
  12. hensue

    hensue Senior Member

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    Here is the answer to an email i posted and apologized

    Thank you so much
    It has been difficult. Some patients are just angry. This is a very difficult virus to detect and it can hide. I am so glad Dr. Lombardi is working with us and we have the information right from him because he understands this virus the best. Our policy is to release results only when we are confident in the determination. Dr. Lombardi has come in and is reviewing all tests and has decided to re-run several. I am confident we are doing the right thing and in the end the patients will understand. It is true, patients have been sick for a long time. We want to be sure. Being sure is the only way we can work with pharmaceuticals to develop a treatment.
    Thank you again
    Marguerite
     
  13. imready

    imready Guest

    Hensue

    When I read this post early today, I cringed and thought to myself why would that gal (Kim) write something like that. But sometimes I think it's the nature of the beast with forums. There are so many people who read and post things on forums and every mind is different. We all read into things or see things our own way. Unfortunately sometimes we act with good intensions and it doesn't come out that way. I'm sure that Kim feels horrible and cringed herself when she realized that her e-mail to VIPDX came off wrong. Which unfortunately it did and ended up affecting Hensue.


    I hope that my post hasn't offended anyone.
     
  14. cfs since 1998

    cfs since 1998 *****

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    Hmm good thing to think about. The webmaster has the ability to prevent Google from indexing certain pages or subdirectories.
     
  15. _Kim_

    _Kim_ Guest

    hensue,

    I am sincerely sorry for the impact my actions have had on you. I truly thought that I was being helpful when I sent the email to VIPdx. I wish I could take it back. The best I could do is to delete my posts and apologize.

    To the rest of the members that posted on this thread: I am sorry if I misrepresented your messages in my communication with VIPdx.
     
  16. leaves

    leaves Senior Member

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    Hensue

    These are such exciting times for us. This test for me may be life altering. We are all sick, have all been treated awfully, have all lost hope sometimes or worse, have lost trust in ourselves.
    Now we know that the future will either bring us yet another dissapointment that we somehow have to deal with OR perhaps, getting our lives back.
    For me this uncertainty is hard to handle and is does not bring about the best of me. I became a compulsive xmrv googler, and emotional and stressed out. And then this endless waiting for the test results, it is nobodys fault, but these circumstances are not for the mortal. It is easy to become annoyed at eachother and it may even reduce inner tension. But all of us are in the same boat, all of us are worried sick and all of us try to do something just to do something. I don't think there are any bad intentions here. Please keep posting and keep speaking your mind.
     
  17. Koan

    Koan Be the change.

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    THAT would be brilliant!

    Brilliant!

    Please!
     
  18. Kati

    Kati Patient in training

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    Kim, personnally I think it was a good thing that you e-mailed VIPDX and that you got an answer from concerned parties. It proves they want to do the right thing and they care about us.
    I didn't take it the wrong way, and it as good information to have for those that tested inconclusve.

    People are worried about their tests, and it shows here. Sorry Hunsue you took it the wrong way. I don't think Kim meant bed at all.
     
  19. 2Long

    2Long

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    Kim, you have nothing to apologize for.

    You spoke for us out of the most sincere concern. Your good intentions will not lead you to Hell....

    <Mod Edit>

    I am proud of their work but even they "secretly" know they might have went too far, too soon. John Coffin's attitude is really the best to have at this time: "More is needed".

    Voicing concerns to a company is what make a company better. If they do not think they must answer to their customers, then what good are they ?
    However, they have answered and been fairly straight about things.

    The other thing that really concerns me is all of the repeat testing, admitted in the response. If this is the lab that brought us 65+/95+[%] positive XMRV patients, then why all the quadruple checking.

    Are we looking for something that might not even be there and that might become contaminated on the 3rd or 4th try ?

    I understand all of this is very very new but no one should be casting stones at Kim for asking perfectly valid questions on such an experimental and expensive test !!!

    <Mod Edit> As of this posting [no one has replicated the WPI research], so stop acting like this is the final word regarding CFIDS/ME :p

    I'm rooting for WPI [and others] but I still have unanswered questions and believe me, VIP Labs will not shut down their lab over honest customer inquiries. Let the people do their work but if you are concerned, let them know. They are working for you :D

    <Mod Edit>
     
  20. lebowski

    lebowski

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    "Are we looking for something that might not even be there and that might become contaminated on the 3rd or 4th try ?"


    maybe they have an uncontaminated , pro lab in which they can make these tests .. maybe they know how not to contaminate blood ?

    and i still cant understand how it is possible to contaminate the blinded (? ) cfs samples but not the controls .. shouldnt negativism on various threads on this site find a possible mechanism for this when coming with this argument ..

    " but germans couldnt find xmrv " come on let it be germans problem ..
     

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