The emotional impact of XMRV

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ladybugmandy, i relate to a lot of those feelings...when the information first came out i felt a bit like i might have something a bit akin to leprosy and thought a lot about the stigma attached to AIDS, particularly in the early years. the idea that i could pass this on to a partner or may have in the past and they could be a carrier scares me and evokes all sorts of emotional responses at various times. for now i'm trying not to get ahead of myself and just wait and see how it all plays out...
 

Gemini

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Andrew,

If you haven't already, you might consider contacting Dr. Silverman at the Cleveland Clinic (discovered XMRV in prostate cancer) and asking him or his colleagues for the name of a oncologist in your area.

Gemini
 

serenity

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ladybug i totally understand how you feel. the way i see it, people haven't been very nice to me anyway & i don't expect they will start no matter what happens. im already a total social outcast & i dont' expect anyone to say "oh i'm so sorry we doubted you!" if this all turns out to be true. i expect them to continue to be cruel, as they always have been. but, at least they'll take me seriously. the way i feel, no matter what fight i have ahead or how dark it is it is better than this continual limbo i have been living in where no one believes me & no one can help me. screw it, at least rather than not believing me they will fear me. i think i'd rather the latter.
 

serenity

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well, there are mountains ahead - i agree. but, at least i'm being given a fighting chance here maybe. there is so much to think about, i wonder too will i need therapy to deal with all i've been thru. let's say this all pans out & they find a treatment & i get to feel better ... will i take on the world like a person who has been let out of jail, or will i contiue to be afraid due to years of conditioning? 20 years of "be careful, you might hurt yourself" might be hard to overcome. but then again, if the few times i've felt good over the past i dunno how many years are any indication... there's no stopping me!
:)
 

ukxmrv

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I was thinking of all the people in the UK who are HIV+ still to try and get an idea of what may happen in the future for XMRV.

PW Aids now they get so little publicity on the TV and in the newspapers that I realised that I no longer knew what they were experiencing. All my friends who were HIV+ in the early days are now dead or moved abroad so I have no experience of "now".

When the December AIDS Day came around I only noticed coverage on PWAids in Africa and not a thing on people living with AIDS in the UK

It may come to that with the XMRV group. Little publicity if this really is the "thing" for us after the first panic from the well population that is frightened of being infected.

We "just" become another disease that people think is being dealt with. What happened to us both as individuals and as a group may be swept under the carpet.
 

serenity

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yes, as i said - i don't expect much from people anymore. there was a time when i was naive & thoguht people rallied around the sick to help them. now i've learned.
i won't care if i get to feel better. i'll either forgive people or i won't & that will be ok either way. the only concern i have is that i will be too energetic for my husband, who i married because he is a laid back kinda guy.
i had these same fears when i had my back surgery, back when i thought fixing my upper back was all i needed. that of course didn't turn out to be the case & i never had to worry about all the maybes. but this time... we'll see... maybe it's time for maybes again...
 

ukxmrv

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There is a film being made in the UK right now on ME and I've been asked to participate in an interview. They were after some old time people who had been ill since the 80's.

I keep rehearsing mentally in my head what I would like to say. Not individual vindictive things but the truth of how it has been to be ill for so long.

If I was to do this I imagine that some old friends and family members might get the picture - but only the really "good" ones - if you know what I mean.

What do others think?
 

serenity

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it is Jimbob it is.
i think it's an excellent opportunity ukxmrv, i would jump at the chance. it would be hard to know exactly what you want to say, but i am confident you will do well.
 

Andrew

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Thanks to all for the thoughful words and suggestions. I wish now I had read and responded earlier. I am actually not every upset by this. I've seen it coming for a long time. But I'm also not making the right moves to find someone who can really help me with this. I guess I've sort of put it all on hold while I deal with some oncology issues. And at this point I don't think a few months would make a difference, except that maybe there will be more information. And then there's what Klimas warned about not rushing into use of AIDS drugs.

Still, I should, at least, start trying to identify people in Los Angeles who can help me with this. I really don't want to work with someone who does not specialize in working with infecteous diseases, and also highly motivated to learn about XMRV and its treatment. IOW, I don't want a doctor I have to explain everything to.
 

jace

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Gosh, what a wonderful idea, a doctor who understands ME. I'm not sure if such an animal exists around here, but I'm working on it. Hey ho. Educate all you can, people.

It would be fun to watch if they all climb on the XMRV bandwagon, should things pan out as I hope.

I was tested on Wednesday, as part of the UK WPI study. And this morning, I am close to tears, mourning my lost life, and excited with no real good reason - yet. Fingers crossed.
 

Sing

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Getting back to this thread after weeks, I am moved, disheartened, and even amused by some of the things you've been sharing here. I want to "second" this line by Danib:

Docs do SOMETHING to the drugs to make them bigger badder faster.

Like you, it's not that I don't try to eat well or am unwilling to try acupuncture, herbs, etc. but "you don't give a cancer patient a salad and tell them they'll be fine"!

Sing
 

serenity

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thanks Sing! i worry about making statements like that but sometimes i can't help it - that's how i feel! i'm glad that around here it's ok to say that & not be met by a bunch of angry hippies (again no insult to hippies, i happen to love 'em :) )

Jace, wow, i bet being part of a WPI study is really moving it would be for me.
 

Sing

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danib, you crack me up! "A bunch of angry hippies"--that's hilarious. I live in a town full of angry old hippies and I ought to be one of them; I AM one of them, only I draw the line at standing in front of the post office with a big sign and can't afford to eat organic.
 

serenity

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i live in a hippie town myself, well we were (Austin) until the big tech bang a few years ago. but i'm still a hippie at heart :)
only i dont' have the energy to try all the vitamins & alternative treatments out there & fix myself healthy foods all the time.
i need somone else to come up with a tried & true method that really works.
i can't figure out why if acupuncture has been around for thousands of years & can cure anything, we're all still sick?