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Testing positive for XMRV: A personal survival guide needed

Discussion in 'XMRV Testing, Treatment and Transmission' started by gracenote, Dec 30, 2009.

  1. serenity

    serenity Senior Member

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    Austin
    sorry you are having a hard time Grace. thanks for your answer, i feel like i am gettin no info. i know that sounds weird, but i guess i mean no new info. impatient i suppose.
    in shock a little i think. i really want to talk to those who have been hearing about this for months now because - you are further along than me. if that makes sense.
  2. serenity

    serenity Senior Member

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    Austin
    ok, specifically - here is what i want to know, hope i dont' offend... i dont' see any new information. i see a lot of speculation, but i am not interested in picking every study apart. i'm glad people are, dont' get me wrong, but most of that is over my head - i just want to know why the media seems to have dropped this. after the UK studies did they just decide "no smoking gun here" & move on?
    thanks
  3. JAS

    JAS

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    Hi Danib, we are in a time now where replication studies are taking place to confirm the work of the WPI. As you know we have had 3 studies so far, 2 in the UK and 1 in the Netherlands in which we have learnt more about the politics of XMRV than XMRV itself. There is no news particularly for the media at the moment, they need to wait and see how this pans out. Believe me in a little time I suspect there will be plenty of news in that I believe XMRV will be proven to be involved in someway in CFS...just my take on it. Good science takes time as opposed to the recent rushed studies and we need to wait and give them that time. So whilst we wait for the new information there is bound to be a lot of speculation...I just so wish that something could be done about the blood banks, I have been asked twice to donate blood to the UK blood banks in the last 3 months, once by letter and once by phone. If I said that I had been clear of ME for 6 months I could give blood. I should not be allowed to give blood.. I am XMRV +ve.
  4. coxy

    coxy Senior Member

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    That is terrible that you are still being asked to give blood. Would it be worth contacting your local MP about the situation, that sounds like something very important to me, surely they would listen. Have you still got the letter about donating blood as evidence? I know we are to ill to get involved in a big way, but i'm sure you could ask to remain anonymous and just make the point.
    I always say to my husband, if an MP knocked on our door in the build up to the election i would love to get into a discussion about if they are going to do anything better for people with ME, and inform them of our family situation, but i know when it came to it i wouldn't be able to remember a thing!!
  5. serenity

    serenity Senior Member

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    Austin
    thank you Jas so much for your response, i have been researching like crazy & now understand the complications & politics of all this a bit better. i still wonder why so quiet, it seems regular people would be asking questions - you know just "i'm scared, what if..." type questions. it just seems so very quiet to me.
    by regular people i mean people with the disease we have whatever it is, sure the general public too i guess - but i just mean, don't get me wrong i am becoming an expert fast, but you guys seem so very scientific & you know all the specifics of all the research & i'm wondering where Joe Blow & Suzy Shmoe are saying "i dont' get all that scientific garbly gook but i am worried i have a retrovirus". hope i am making myself clear, i hear a lot of talk about the studies & stuff but this thread was about the "survival guide" & i posted in another about "emotional implications". i dunno where the people are just talkin about the emotions they are going thru about the possibility of this. thanks :)
    oh & about the media, i have never known them to much need facts to jump on a story & start blowing it out of proportion. just my take on that - i used to be in PR.
    i'm just really confused about how little it seems is out there even tho as i search all day long i do find more & more. but i am surprised i have to search at all! i'm surprised it isnt in our face 24/7.
  6. JAS

    JAS

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    @ Coxy, :) lol...remembering things is not my best attribute either!! I am living in a marginal seat so hopefully this can work in my favour vis a vis MP's. I am just giving myself a little time for my XMRV result to sink in and to process it...+ I have crashed with the news so need to gain a little more fuel in the tank then hopefully i can start doing some lobbying and become effective. There is a offensive going on with the Wessely camp at the min...it is all just starting up, he is filtering his take on this, though unfortunately in practice this means that he is advising every GP in the UK through the BMJ how to treat ME/CFS as he is the 'expert' ...though how a psychiatrist becomes an expert on a biomedical disease is beyond me. I do believe there will come a time for us all to be involved in getting the message out but I do think we have to wait for some replication study results and the UK study for people to seriously listen to us.

    @Danib, I am not science based either, far from it. I started looking at this PR site about 3 months ago in the same position as you...but things have changed for me radically on a personal level since then. I am very good at doing emotion but I just need to process it, what it all means and come to terms with it first, I seem a bit stumped with this one which is very unlike me! My XMRV is not a probability any longer...I have it and it is hitching a ride for life. I can understand your thirst and desire to know what is so wrong with you and I shared that, but now I kind of know I am not sure how to cope with it! I am as angry as you that nothing is being done about this...nothing moves quickly enough for me, but with this we are right at the start of science. With HIV we got to know about it in the UK circa 85/86/87, but it was known about in the US in circa 1981/2...in my opinion we are at that level of discovery now. The media just do not have anything concrete to go on at the minute which I know never usually worries them but if you read Prof Malcolm Hooper's report you will note that there is no such thing as a free press! There is a big responsibility issue with this too...this has the potential to scare an awful lot of people, this does have to be handled very carefully and the science has to be water-tight. With CFS/ME there have been so many viruses linked with it in the past, you and I know this one is for real, but the public, the gp's, the specialists etc don't, they remember all the other ones which ended up being wrong or unproven....this has to be right this time as there is far too much at stake for all of us.

    So for a survival guide I would suggest; make sure that your core friends and close family are aware of XMRV so they are there for you when the result comes through. Be careful re possible transmission issues, ie, don't share razors, toothbrushes, have unprotected sex, give blood etc. Keep yourself updated with the news on XMRV. Keep talking to people on here where you can discuss your concerns and feelings with people who understand what you are going through. Try not to stress about it as that will only make you unwell, the virus reacts to the stress hormone cortisol. Urge your GP, your specialist etc to go to the IiME conference in London on 24th May to hear about the science behind XMRV (Dr Mikovits, Dr Cheney, Dr Kilmas are all going to be there), if we cannot get XMRV recognised through the top down we have to work hard at grass roots level to get the thinking changed on CFS/ME and undermine the current foundations...science is the only thing which will change their minds.

    I hope this helps, I am sorry it is probably not the answer you wanted...please feel free to keep in touch. :)
  7. serenity

    serenity Senior Member

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    Austin
    i just wrote a long reply to this - hit send & it did not appear! i hope it does later, this happened to me yesterday in another thread & the reply appreared magically later on... so i will wait a bit & reply again if i dont' see it...
    thank you for your response. :)
  8. serenity

    serenity Senior Member

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    Austin
    don't know what is happening to my replies, i have tried twice now.
    anyway, i told my first friend today - a friend who has IBS & IC so i thought she would understand ... it went ok, she was much more excited about the acupuncturist she tried today but she said she would always be here for me & not to worry & she would research XMRV some.
    (just to be clear i told my first friend of the possibility that XMRV causes CFS - i have not been tested.)
  9. serenity

    serenity Senior Member

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    Austin
    my husband & i are now considering my having the test, is it anonymous? we are worried insurance will drop me if i am positive.
    thanks
  10. serenity

    serenity Senior Member

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    Austin
    ok thanks i didn't think so
  11. SunnyGal

    SunnyGal Senior Member

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    But, if you pay for the test yourself and don't share the results with insurance (or others), would insurance find out somehow? I guess if it's in your medical records (a doctor needs to write the lab order for the XMRV testing), insurance can find out eventually. Is that right? No way to protect yourself from that happening?

    Sunny
  12. ukxmrv

    ukxmrv Senior Member

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    As XMRV becomes linked to CFS in the minds of insurance companies, they will start asking about CFS and thinking about CFS (as a way of getting around people not declaring that they are XMRV+)

    It could be similar to the way HIV positive people were treated. Insurance companies started to ask questions about sexuality. I don't know legally if this sort of practice has been stopped in the USA or the UK now though.
  13. Navid

    Navid Senior Member

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    okay...right up front, i'm not trying to start a political dialog/debate...but i do believe one of the major benefits of the new healthcare pkg, passed by the Democrats, is that health insurance can no longer be denied nor revoked due to pre-existing conditions....this is huge if you are a chronically sick person.

    when i first left the big corporation i had worked for most of my adult life, (which offered cadillac health plans) and tried to get insurance on my own, i was denied for a minor ailment and my husband was denied because he had hayfever...this type of screening is or will no longer be allowed under the new health care guidelines. (not sure when this part of the plan goes into effect).

    ok no flaming of the plan, dems or obama...please:D

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